Submission 39
Introduction of Independent Assessments to the NDIS
Policy and Advocacy Team Submission
March 2021
scia.org.au
18 March 2021
Joint Standing Committee on the National Disability Insurance Scheme
PO Box 6100
Parliament House
Canberra ACT 2600
Via email to ndis.sen@aph.gov.au
Introduction
Spinal Cord Injuries Australia (SCIA) welcomes the opportunity to offer a submission to the Joint
Standing Committee on the National Disability Insurance Scheme on the introduction of independent
assessments to the National Disability Insurance Scheme (NDIS). SCIA strongly supports the goals of
the NDIS Act 1 and the continual improvement of the NDIS process for all participants and applicants.
The NDIS represents a major opportunity for eligible people with disability to maintain choice and
control in their lives and truly become equal members of Australian society.
This submission reflects many of the central issues and SCIA’s recommendations related to proposed
reforms of access and eligibility policy and planning policy. Most of SCIA’s concerns relates to the
present uncertainties and lack of participation of people with disability in the co-design of the
proposed reforms
About Spinal Cord Injuries Australia
SCIA is a for-purpose representative organisation working for people living with spinal cord injury (SCI)
and other physical disabilities. SCIA was founded by people with SCI over fifty years ago; people with
disability make up over 25% of our staff, and the majority of our Board live with SCI. SCIA is a national,
member-based organisation that serves 2,500 members made up of people living with disability, their
family, carers, researchers, and other professionals in the sector.
SCIA’s Policy and Advocacy Team provides individual and systemic advocacy, and supports self-
advocacy, with the aim of ensuring that people living with SCI and other disabilities do not face barriers
in exercising their independence and realising their human rights. SCIA’s individual advocates have
extensive experience assisting people with a range of disabilities, including providing support for NDIS
appeals and internal reviews in NSW. The team strives to achieve inclusivity and change for people
with disability, their family members or carers.
Submission consultation
The recommendations collated in this submission are founded on feedback and reflections from SCIA
members and staff with personal experience with the NDIS. Additionally, SCIA co-hosted a public
roundtable with the Physical Disability Council of NSW and Muscular Dystrophy NSW on the
introduction of independent assessments with approximately 50 attendees in February 2021.
1 National Disability Insurance Scheme Act 2013 (Cth).
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Executive summary and recommendations
The introduction of independent assessments represents a radical change to the NDIS. SCIA’s
consultation with the disability community has revealed common concerns that reflect the scepticism
and distress about the impact of independent assessments. In light of this, SCIA recommends that:
1. The national rollout of IAs should be indefinitely postponed beyond July 2021 and only occur after
further consultation with the disability sector.
2. The NDIA and DSS should conduct a thorough engagement project to ensure that people with
disability and other stakeholders in the disability sector co-design reforms to the NDIS.
3. IA participants should be matched with assessors who have specific expertise in their
disability/ies or have sufficient knowledge of their disability/ies.
4. The matching process should account for IA participants’ circumstances, considering whether a
person is from an ATSI and/or CALD background, gender and age, among others.
5. IA assessors should undergo rigorous training for accreditation and re-accreditation, including
adopting a trauma-informed approach.
6. Multiple safeguards should be implemented before the national rollout of IAs to provide quality
assurance of assessors.
7. The IA toolkit should focus on understanding a person holistically and consider their current
participation in activities, as well as their future goals.
8. NDIA delegates should receive a written statement of a participant’s goals prior to publishing a
draft plan.
9. The NDIA should reconsider adopting the I-CAN assessment within its IA toolkit.
10. The list of IA exemptions should be open and include circumstances, among others, involving risk
of distress to the IA participant and in which a person is yet to be discharged from hospital or a
rehabilitation centre. Additionally, IAs should be suspended if the process is causing the IA
participant distress.
11. The NDIA should publish all information related to how delegates account for IA results when
making access and planning decisions. This includes details of any internal operational guidelines
or personalised budget tool.
12. Participants should have the opportunity to discuss the level of funding during the planning
meeting.
13. The right to appeal the results of an IA should be integrated into the legislative framework to
protect the interests of IA participants. Additionally, IA participants should receive IA results prior
to a delegate making any access decision or draft plan.
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The NDIA should publish statistics on the costs of the IA pilots and provide insight into funding arrangements with assessor organisations.
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Extensive public sessions must be held to disseminate information about the role of IAs and hard copy materials must be published in all accessible formats and disseminated to people with disability, their support networks and the wider disability sector, before any rollout of IAs or proposed changes.
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IA assessors should receive information about an IA participant about their circumstances prior to an IA and IA participants should understand clearly the role of an IA and the choices they have in the IA process.
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The development and introduction of independent assessments into the NDIS
SCIA would like to highlight the significant flaws in the development of independent assessments (IAs) in their current form.
Following the recommendations of the Productivity Commission,2 affirmed in the recommendations from the Tune Review,3 and following announcements from the Minister for the NDIS,4 it has been anticipated that some form of assessment of a person’s functional capacity would be integrated into the NDIS process. However, the journey leading to the introduction of IAs has unfortunately lacked genuine, ongoing consultation and co-design with the disability sector, current and prospective NDIS participants and applicants, and their support networks.
The introduction of IAs forms a major component of the “most substantial package of reforms to the NDIS since its establishment”.5 As such, it was to be expected that the people whose lives will be most impacted by these proposed reforms should be at the centre of consultation and co-design of IAs. While reports claim that the design of IAs was informed by input from a reference group from the Independent Advisory Council on the NDIS (IAC), other disability organisations and academics,6 it is very unclear how extensive this consultation was and how much input was sought from the target population for IAs – prospective and current NDIS participants and applicants and their family members. The NDIA’s consultation process has been ad hoc and has not allowed for genuine engagement on the implementation of IAs before their scheduled introduction in mid-2021.
Further, as the following sections illustrate, the recommendations and evidence underpinning theintroduction of IAs do not justify a national rollout to all prospective NDIS applicants and the 412,543 current NDIS participants of IAs in their current form.7
2 Productivity Commission, Disability Care and Support, Report No. 54, 2011, p. 327. 3 David Tune, Review of the National Disability Insurance Scheme Act 2013: Removing Red Tape andImplementing the NDIS Participant Service Guarantee, December 2019, p. 67. 4 Minister for the National Disability Insurance Scheme, Hon Stuart Robert, ‘The NDIS Plan’, Speech, 14 November 2019; Minister for the NDIS, ‘Landmark reforms to deliver on the promise of Australia’s NDIS’, NDIA, 28 August 2020, https://www.ndis.gov.au/news/5207-landmark-reforms-deliver-promise-australias-ndis. 5 Ibid. 6 See for example, National Disability Insurance Agency (NDIA), ‘Independent Assessments: Selection of Assessment Tools’, September 2020, p. 15. 7 As of 30 September 2020.
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1.1. Tune Review recommendations on independent assessments
Recommendation 7 from the Tune Review supported the introduction of a new model of functional
capacity assessments.8 However, while the Australian Government’s response supports this
recommendation,9 the specific comments and sub-recommendations made in the Tune Review have
either been ignored or not genuinely incorporated into the proposed reforms. For example, the report
emphasised that the program would “require extensive consultation with participants, the disability
sector, service providers and the NDIA workforce”.10 As noted above, the ad hoc and accelerated
nature of the present consultation could not be characterised as extensive.
As the report notes, the success of IAs in the NDIS will largely depend on “the willingness of
prospective participants and participants to work with NDIA-approved functional assessors”.11
However, following consultation with SCIA members who are current NDIS participants, many felt
wary of the process and engaging with an independent assessor. Below are some of their responses:
“I won’t talk to anyone unless I know them and I won’t talk about my life so openly with complete strangers.”
[NDIS participant and SCIA member]
“It’s important not to be dictated to about how you get [an IA]…Once a person is on the NDIS, they should be
able to choose their therapists…it stands to reason that those people are the ones that do reports on you…it
makes no sense to go to see some independent person who meets you for four hours.”
[NDIS participant and SCIA member]
The evidence from both pilot projects will not reflect willingness to engage with assessors as
participation in the projects is voluntary, and more recently incentives have been introduced.12 This
will only be accurately tested during the rollout.
The report also identifies several ‘key protections’ that should be adhered to. The first of these
protections reflects the importance of participants or applicants’ choice: “the right to choose which
NDIA-approved provider…undertakes the functional capacity assessment”.13 However, the
consultation paper limit this protection as “where possible, applicants will be able to give their
preferences about which organisation they would like to complete their independent
assessment”.14 Choice and control is a fundamental legislative object of the NDIS and this clause limits
this from the outset of a person’s interaction with the scheme.15
The second key protection relates to “the right to challenge the results of the functional capacity
assessment, including the ability to undertake a second assessment”.16 The consultation paper
outlines that “applicants can only seek a second assessment where the assessment was not
consistent with the IA framework, or if the applicant has had a significant change to their functional
8 Review of the National Disability Insurance Scheme Act 2013, p. 67.
9 Australian Government, ‘Australian Government response to the 2019 Review of the National Disability
Insurance Scheme Act 2013 report’, August 2020, p. 7.
10 Review of the National Disability Insurance Scheme Act 2013, p. 66.
11 Ibid.
12 NDIA, ‘Latest News: Improvements to the second independent assessment pilot’, 8 February 2021,
https://www.ndis.gov.au/news/5967-improvements-second-independent-assessment-pilot
13 Review of the National Disability Insurance Scheme Act 2013, p. 66.
14 NDIA, ‘Consultation paper: Access and Eligibility Policy with independent assessments’, November 2020, p.
18.
15 National Disability Insurance Scheme Act 2013 (Cth) s 3(1)(e).
16 Review of the National Disability Insurance Scheme Act 2013, p. 66.
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capacity or circumstances”.17 While standardised tools will be used during IAs, there may be a degree of inconsistency, due to a variety of reasons including:
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Varied professional backgrounds of assessors,18
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Choice of activity undertaken during the IA,19
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Whether an appropriate support person is present,
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The location or medium of the IA (virtual meeting, in person, at the assessor’s office, at home, at a public place),
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Whether the assessor can communicate directly with the applicant/participant or if there is an interpreter present,
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Whether the assessor has knowledge of particular disability types, and
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Whether the assessor comes from a similar cultural background.
When a person’s choice of assessor has already been limited, it is even more appropriate for a person to seek a second IA if there are sound justifications, beyond a change in circumstances or a failure to adhere to the IA Framework (which may be unknown to the applicant/participant).20
This also relates to the report’s recommendation that “the NDIA should not implement a closed or deliberatively limited panel of providers to undertake functional capacity assessments”. If a person’s choice of assessor is going to be guaranteed, the NDIA must cast a wide net to ensure that there are numerous providers and assessors available on the panel prior to the program’s rollout. Information related to each assessor and assessor organisation should be transparent and made available to applicants/participants before they indicate their preference for which assessor or organisation suits them. Statistics recording the number of assessors and assessor organisations, their professional backgrounds and other indicators (including whether they come from a culturally and linguistically diverse background or if they identify as Aboriginal and Torres Strait Islander) should be publicly available and included in the NDIA’s Quarterly Reports. Further, the NDIA should provide specific details regarding the initial and ongoing training programs assessors undergo before they conduct IAs. 1.2. Productivity Commission recommendations on assessments and developing a ‘toolbox’ 21 The introduction of IAs is also supposed to align with the recommendations of the original report published by the Productivity Commission (PC) in 2011. However, based on the information contained in DSS’s Information Paper and the consultation paper there seem to be discrepancies with the specific recommendations from the PC. First, it is a little unclear what degree of information will be provided to assessors prior to conducting an IA on a participant or applicant apart from their contact details, but the PC suggested that assessors should receive “information about a person’s relevant medical conditions and specialist assessments would be made available to [them]”. The report also focuses on consistent monitoring of the assessment process, ensuring that it falls within the scope of the World Health Organisation’s International Classification of Functioning, Disability and Health (ICF). It 17 NDIA, ‘Consultation paper: Access and Eligibility Policy with independent assessments’, November 2020, p. 23. 18 See Department of Social Services, ‘Improving the National Disability Insurance Scheme: Better Participant Experience and Improved Access and Planning’, Australian Government, Information Paper, 24 November 2020, p. 9. 19 NDIA, ‘How independent assessments will work?’, 3 December 2020, https://www.ndis.gov.au/participants/independent-assessments/independent-assessment-q-and/how- independent-assessments-will-work. 20 This will be further discussed in the ‘Other related matters’ section of the submission. 21 Productivity Commission, Disability Care and Support, Report No. 54, 2011, p. 21.
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also reiterates the importance of regular monitoring and accreditation of assessors. These specific issues will be later discussed in this submission.
1.3. Reliance on findings from the pilot projects
The methodological gaps of the first pilot project and the lack of reliability of its findings provide little
empirical support for delivery of IAs in their current form. Further, results from the second pilot project
has yet to publish significant results that further support implementation of IAs on a national level.
The following section will briefly identify the gaps that the pilot projects have not addressed.
1.3.1.First pilot project (November 2018 to April 2019) 22
The data from the first pilot project was highly limited in its empirical reliability. Firstly, there is a major
issue with underrepresentation and applicability to the national NDIS population. IAs in the first pilot
project were only conducted on participants and applicants with ASD, ID and PSD.23 While this group
represented 63% of all NDIS participants, it is still difficult to extrapolate the results from this pilot to
those with spinal and neuro conditions, and other physical disabilities. Further, the data only related
to participants and applicants living in metropolitan NSW.24 IAs will have a great effect on those living
in rural and remote areas and it is vital to evaluate their experience of IAs to determine whether the
available pool of assessors is appropriate for them. Additionally, 71% of participants and applicants
were male, only 1% were from an Aboriginal and Torres Strait Islander background and 7% identified
as from a culturally and linguistically diverse background. Additionally, the data was skewed by age as
64% of participants and applicants were aged 14 years and under.
Further, while the participation rate of 28% (145) of the 513 participants and applicants may be
‘statistically valid’,25 it seems inadequate. Further, of these 145 survey respondents only 35 were
participants (7%). The rest were participant nominees (e.g. parents, carers and others). It should be
noted that participants were all aged 7 and above.
The timing of completion of the survey is also important to fairly understand a participant or
applicant’s opinion of the IA and its role in their NDIS journey.26 The first pilot revealed that of the 145
survey responses, 126 were completed directly after the IA and only 19 were completed after the
planning meeting (13%).27 This difference indicates that more data needs to be collected at the stage
after the planning meeting to determine exactly what impact IAs may have on the discussion and how
a participant’s plan may be impacted by its results. As such, the satisfaction rates published in the
report may not be truly representative and consider all variables affecting participant’s views.
As a final comment on the first pilot project, there was a major discrepancy between the report,
published in September 2020,28 and a response given during Senate Estimates in October 2020. The
report stated that “in the first pilot, surveys were administered by telephone or face-to-face”,
however in response to a question on notice, the NDIA replied that “all participant and participant
22 Data and findings quoted in this sub-section from National Disability Insurance Agency, ‘Independent
Assessments: Pilot learnings and ongoing evaluation plan’, September 2020.
23 Autism Spectrum Disorder, Intellectual Disability and Psychosocial Disability.
24 Note that NSW participants only represent 31.5% of all NDIS participants, as of 30 September 2020.
25 Commonwealth, Senate Estimates 2020-2021: Community Affairs, 29 October 2020, Answer to Question on
Notice NDIS SQ20-000299 (NDIA).
26 Noting that obviously in the pilot studies of IAs it is not expected that IAs will impact access or planning
decisions.
27 Commonwealth, Senate Estimates 2020-2021: Community Affairs, 29 October 2020, Answer to Question on
Notice NDIS SQ20-000303 (NDIA).
28 NDIA, ‘Independent Assessments: Pilot learnings and ongoing evaluation plan’, September 2020.
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representative surveys were conducted online”. These contradictory responses are concerning as it reflects either a lack of accuracy or transparency in communications from the NDIA.
1.3.2. Second pilot project (Late 2019, October 2020 to present) 29
The early findings from the second pilot project are also limited in light of the postponement resulting from the COVID-pandemic. The published report on both pilots’ findings noted that “readers should interpret these findings cautiously when generalising to IAs more broadly”.30 As such, the findings published in the report will be considered in light of further results released following the completion of the second pilot.
It is as yet unknown when the findings from the second pilot project will be released, despite assurances that the pilot would be finished by early 2021.31 While it was hoped that a significant portion of 4000 invited participants and applicants who had undertaken IAs would complete the pilot survey, as of 11 November 2020, of the 4896 pilot IA invitees, only 215 had accepted, 185 had declined and 4,496 had not yet responded. During questioning in Senate Estimates, it seems that a statistically significant result requires responses from at least a further 715 respondents.32 Regardless, even if all 4,496 were to respond to the survey, this would represent less than 1% of all NDIS participants, let alone applicants. It is hoped that this figure of 715 is reached in due course and the pilot’s results (including demographic breakdowns) are published in the near future. It is difficult to determine exactly what impact the pilot’s findings will have on the improvement of IAs ahead of their rollout.
Generally, it is unclear exactly what purpose this pilot serves. During Senate Estimates in October 2020, the NDIA answered that “the findings from the second IA pilot evaluation will refine the national implementation of IAs and provide learnings to improve the model for national rollout”.33 During a public consultation, NDIA representatives indicated that the pilot would be completed in July 2021. If the purpose of the pilot is to “inform how [the NDIA] implement independent assessments later this year”,34 when the time set for the conclusion of the pilot is simultaneously the start of national rollout it seems impossible that there is the possibility for meaningfully making improvements to implementation based on the pilot’s learnings. Additionally, while ongoing monitoring has been promised throughout the rollout of IAs, it is still unclear what format and extent this will take.35
1.4. Engagement and consultation
The Tune Review emphasised the need for extensive consultation with the disability sector in the development of IAs and any reforms to the NDIS. However, while the NDIA and DSS has coordinated numerous open and closed consultation sessions and has indicated that they are “actively seeking
29 This submission has relied on information provided on National Disability Insurance Agency, ‘How independent assessments will work? – The second independent assessment pilot’, 11 January 2021, https://www.ndis.gov.au/participants/independent-assessments/second-independent-assessment-pilot/how-does-independent-assessment-pilot-work. 30 NDIA, ‘Independent Assessments: Pilot learnings and ongoing evaluation plan’, September 2020, p. 16. 31 Commonwealth, Senate Estimates 2020-2021: Community Affairs, 29 October 2020, Answer to Question on Notice NDIS SQ20-000340 (NDIA). 32 See Commonwealth, Senate Estimates 2020-2021: Community Affairs, 29 October 2020, p. 58. 33 Commonwealth, Senate Estimates 2020-2021: Community Affairs, 29 October 2020, Answer to Question on Notice NDIS SQ20-000345 (NDIA). 34 NDIA, ‘What happens with the information from the pilot?’, 21 January 2021, https://www.ndis.gov.au/participants/independent-assessments/second-independent-assessment-pilot/what-happens-information-pilot. 35 Commonwealth, Senate Estimates 2020-2021: Community Affairs, 29 October 2020, Answer to Question on Notice NDIS SQ20-000340 (NDIA).
feedback on [IAs] and other reform proposals through an ongoing and comprehensive consultation program”,36 SCIA is concerned about whether this process will produce genuine outcomes. The National Disability Strategy 2010-2020 (NDS) emphasises the need for people with disability to “play a central role in shaping and implementing policies, programs and services that affect them”.37 The concept of ‘shaping and implementing’ involves co-design, proactive outreach, prior consultation and ongoing active participation in the development process. Reflecting on the process this far does not reflect this central principle in the NDS, which is a direct reflection of Australia’s obligations under the United Nations’ Convention on the Rights of Persons with Disabilities (UNCRPD). Additionally, the Commonwealth Ombudsman has already warned that “poor or inconsistent information, unclear processes and delays…are the most frequent causes of complaints…[These] issues may arise with the introduction of a number of changes to policy, processes and timeframes within a short period”.38 This is particularly clear when considering the words chosen by DSS and the NDIA to continue to “consult, discuss and provide information regarding these changes”.39 This only allows people with disability, who will be affected the most by the proposed reforms, a passive role in the process. This clearly does not live up to the expectations set in the NDS.
In light of the above issues, particularly the existing accelerated timeline, the national rollout of IAs should be indefinitely postponed to allow for further extensive, open-ended consultation with existing participants and prospective applicants. Additionally, the results from the second pilot project need to be published and thoroughly analysed before any rollout.
Recommendation 1: The national rollout of IAs should be indefinitely postponed beyond July 2021.
Recommendation 2: The NDIA and DSS should conduct a thorough engagement project to ensure that people with disability and other stakeholders in the disability sector co-design reforms to the NDIS.
2. Assessors
Protecting applicants and participants by ensuring that IAs are conducted appropriately, reliably and safely is crucial to avoid disengagement and dissatisfaction with the process, which will be critical to its success, as noted in the Tune Review.40 Often this will involve allowing as much flexibility to the process as possible, with particular focus on the matching process between the IA participant and assessor. The success of this process will be affected by the size of the pool of assessors and the NDIA should make every attempt to allow the preferences of the IA participant to be followed. However, this will obviously involve significant human and financial resources, which should be accounted for by the NDIA. This section will analyse specific aspects of the IA that will contribute to a person’s sense of its benefit to their NDIS journey.
2.1. Expertise
It is understood that the list of assessors will include a variety of allied health professionals, however it must be recognised that the number of disabilities experienced by NDIS applicants and participants in different circumstances are numerous. As such, assessors need more than simply their professional
36 DSS and NDIA, ‘Joint Submission to the Joint Standing Committee on the National Disability Insurance Scheme’s Inquiry into Independent Assessments’, March 2021, Submission No. 13, p.2. 37 Council of Australian Governments, National Disability Strategy 2010-2020, Commonwealth of Australia, 2011, p. 24. 38 Commonwealth Ombudsman, ‘Inquiry into Independent Assessments’, Submission No. 4 to the Joint Standing Committee on the National Disability Insurance Scheme’s Inquiry into Independent Assessments, p.3. 39 DSS and NDIA, ‘Joint Submission to the Inquiry into Independent Assessments’, p. 19. 40 Tune Review, p. 67.
qualification, they need accurate knowledge about a person’s disability/ies. Many SCIA members and others with disability have repeated that they have been frustrated by interactions with people who do not understand the basics of the possible impacts of their disability. For example, one practitioner asked what date a person with spina bifida acquired their disability.
Each assessor should have at the very least a basic understanding of the disability/ies or health condition/s that impacts the person. This is particularly relevant when conducting the initial informal conversation with an IA participant as they may fail to ask questions that will be specifically relevant to understanding the participant’s life. Alternatively, many people can become disengaged if they are repeatedly answer questions that are irrelevant for their functionality or circumstances. This requires a degree of preparation by the assessor which will be discussed later in Section 7.2.1. Also, when discussing which activity to complete during the IA, an assessor must be sensitive to the appropriateness of the activity to the IA participant and ensure that it respects their dignity. For example, an assessor should allow the IA participant the choice of activity and only make suggestions if they have a sufficient level of knowledge before that will reflect that person’s level of functionality.
Additionally, applicants and participants should be made aware of what information assessors receive regarding their circumstances prior to an IA. At every step, people should be provided with information written in plain English, via email or post and additionally have the option to discuss the process orally with an NDIA representative or assessor organisation.
Clinical experience is also an important factor to ensure assessors have sufficient expertise. At present, assessors must have a minimum of 12 months full time clinical experience, but ideally this should be increased to 2 years.41 Ideally, many noted that they would also prefer an assessor with lived experience of disability, either as a person with disability or as a carer.
As will be discussed, trust in an assessor’s expertise and knowledge of their disability is very important, particularly when an IA participant is denied specific choice in assessor. As one person highlighted: “Clients have preference with virtually every other aspect of services, why should that not be the same when conducting an individual assessment, which is pivotal in not only determining whether they get access to the scheme but also the value of their plan?”.
2.2. Personal traits
There are several traits that an assessor should possess to effectively engage and understand an IA participant’s experiences. Every assessor should have a high degree of empathy toward IA participants. An IA can be a confrontational, deeply personal experience: “You have to talk about things that are embarrassing and shameful, your dignity goes out the window. How much do we have to keep lowering ourselves?”. Assessors must be highly sensitive to many people’s similar views.
SCIA has heard of numerous incidents in which service providers and treating health practitioners have failed to appreciate a person’s needs and unique voice. This is closely tied to an ability to actively listen to an IA participant as they describe their situation. Assessors should not enter an IA with preconceived notions of people with disability or the person’s specific diagnosis and assert what they assume is that person’s experiences. As already mentioned, trust will be a cornerstone to the IA process and IA participants and their support persons need to be assured that assessors have their best interests at heart and will objectively assess their situation without bias or ulterior motives. If an IA participant or support person feels that they cannot trust an assessor, there may be a risk that people ‘present’ themselves in a deliberate manner that does not reflect their actual circumstances.
41 NDIA, ‘Independent assessors’, 25 February 2021, https://www.ndis.gov.au/participants/independent-assessments/independent-assessors#choice.
2.3. Other considerations
There are several other factors that should be considered when matching an assessor to an IA participant as the degree of comfort between them may materially affect the responses given. These factors include:
- Whether a person comes from an Aboriginal or Torres Strait Islander background (ATSI);
- Gender of IA participant or assessor;42
- Whether a person comes from a culturally and linguistically diverse background (CALD);
- Age of assessor;43 and
- Age of IA participant.44
Children are particularly vulnerable in an IA setting and will be at greater risk of distress when being ‘assessed’ by a stranger. As such, it is preferable that parents and guardians have ultimate choice of assessor as this will increase the child’s ability to trust them. There are several other considerations that should be evaluated before conducting an IA and this list should remain open to further suggestions following consultation with people with disability.
Recommendation 3: IA participants should be matched with assessors who have specific expertise in their disability/ies or have sufficient knowledge of their disability/ies.
Recommendation 4: The matching process should account for IA participants’ circumstances, considering whether a person is from an ATSI and/or CALD background, gender and age, among others.
2.4. Training
Assessors should initially and in an ongoing manner undertake mandatory training programs. These should include, but not be limited to: cultural awareness training, disability awareness training, gender awareness training, adopting a trauma-informed approach, mental health training, de-triggering, intersectionality, personal bias training and conflict resolution. These training programs should be an integral aspect of the accreditation and re-accreditation process for assessors.
Recommendation 5: IA assessors should undergo rigorous training for accreditation and re-accreditation, including adopting a trauma-informed approach.
2.5. Quality assurance
There should be numerous quality assurance mechanisms in place meet the expectations of applicants and participants, and their support teams of IA assessors. The following recommendations would act as safeguards to serve this purpose:
- A robust, accessible, efficient and independent complaints mechanism;
- Regular auditing by independent third parties to measure applicants and participants’ satisfaction with the IA process and their assessor;
42 While gender has already been identified as a guaranteed choice for IA participants, it should be noted that this includes male, female and other gender identities. 43 Many NDIS participants aged over 50 with spinal cord injury have admitted that they would feel uncomfortable discussing continence issues with an assessor under 30 years of age. 44 Children aged 8 and above should have the option to have their entire support team present during assessments and have their parent or guardian present at all times.
- This should involve regular self-reporting from applicants, participants and their support persons in the form of surveys prior to, directly following and after an access or planning decision has been made to assess opinions and impact of IAs;
- This is critical as IAs will affect different cohorts of people with disability differently, and is particularly relevant for SCIA’s membership, as very little data during the pilot has been collated or published on people with physical disability;
- Re-assessment and continuing professional development programs to regularly monitor the accreditation of individual assessors and assessor organisations (this is particularly critical if the toolkit is updated in the early stages of the rollout);
- Statistics related to IAs (including details about the depth of the Assessor Panel, length of IAs, locations of IAs, medium of IA) should be collected and regularly included in the NDIA’s Quarterly Reports; and
- Applicants and participants should have the opportunity to record IA sessions and use such recordings if necessary to support complaints.
Recommendation 6: Multiple safeguards should be implemented before the national rollout of IAs to provide quality assurance of assessors.
3. Assessment toolkit
There is no truly comparable assessment process in other jurisdictions in the provision of other government services that reflects the stated goals of IAs. As such, in establishing a best practice model there needs to be considerable empirical assessment and co-design with the disability sector and allied health professionals in Australia. In spite of this, there are general comments and recommendations that may be made about the appropriateness of the selected assessment tools.
When determining the appropriateness of the assessment tools selected for use in IAs it is important to identify the ultimate goals of IAs. Keeping in mind recommendations from the Tune Review as well as information from DSS,45 the following sections will be based on an understanding that IAs aim to:
A. Increase consistency and transparency of access and planning decisions; B. Provide accurate, valid and reliable information about a person’s disability and its impact on their entire life, to better understand their strengths and environment; C. Increase fairness and equity to all NDIS applicants and participants; D. Allow people “more and better opportunities to take part in everyday life and pursue their goals”;46 and E. Minimise financial and administrative burdens for applicants and participants.
Considering the above, an IA should attempt to understand a person holistically, accounting for the diagnosis of their chronic health consideration, its impact on a person’s day-to-day functionality, social determinants47 and an IA participant’s aspirations. It is only by gaining this holistic view of a person, their health and their environment that the NDIA may compare people in similar circumstances when
45 Tune Review, p. 59; DSS, ‘Improving the National Disability Insurance Scheme: Better Participant Experience and Improved Access and Planning’, p. 8. 46 Ibid. 47 According to WHO, these include: income and social protection; education; unemployment and job insecurity; working life conditions; food insecurity; housing, basic amenities and the environment; early childhood development; social inclusion and non-discrimination; structural conflict; access to affordable health services of decent quality. WHO, ‘Social determinants of health’, WHO, 2021, https://www.who.int/health-topics/social-determinants-of-health#tab=tab_2.
making access and planning decisions. This is a particularly significant issue as the results of a person’s IA may inform not only an access decision, but also future planning decisions.
All IA tools are supposed to align with the Activities and Participation provisions of the World Health Organisation’s International Classification of Functioning and Disability (ICF),48 as recommended in the NDIS Act and 2011 Productivity Commission Report.49 One founding principle of the ICF is universality. Universality recognises that diagnosing health conditions and assessing functional capacity should not be used as tools to label people with disability as a separate group. At present, applicants to the scheme still require a diagnosis of a permanent disability to fulfil initial eligibility criteria. This already seems to imply that they are being labelled as a separate group. Following this distinction, participants are further asked to critique their level of functionality, as this is the foundation of all proposed IA tools, which can be both traumatising and isolating. This again flies in the face of the principle of universality enshrined in the ICF.
Additionally, in the proposed toolkit,50 the Craig Hospital Inventory of Environmental Factors outlines many of the other circumstantial factors influencing a person’s autonomy, however from what SCIA understands, all of the questions are framed retrospectively: “In the past 12 months…”.51 While an assessment may objectively find that a person’s function is stronger in some domains, it is up to the participant to determine which domains they find NDIS supports will best serve their goals, even if it is in a domain in which their functionality is relatively higher. The NDIS’s approach should be inherently forward-looking and support needs-focused.
It is particularly worrying that discussion of a participant’s goals may only be had during a planning meeting, after a draft plan has been received, as it implies that a person’s goals will not be a factor in determining their plan funding. It is impossible to assess what NDIS supports will ensure an individual person’s choice and control52 without knowing their future short-term and long-term goals. A lump sum that cannot be negotiated during a planning meeting, cannot possibly account for the different supports that will forward their specific aspirations. Therefore, this aspect of the process must be accounted for prior to an NDIA delegate’s consideration of a draft plan.
Recommendation 7: The IA toolkit should focus on understanding a person holistically and consider their current participation in activities, as well as their future goals.
Recommendation 8: NDIA delegates should receive a written statement of a participant’s goals prior to publishing a draft plan.
3.1. An alternative assessment tool: I-CAN
48 World Health Organisation, Towards a Common Language for Functioning, Disability and Health, WHO/EIP/GPE/CAS/01.3, Geneva, 2002, p. 14. 49 NDIA, ‘Independent Assessment Framework’, August 2020, p. 14. 50 NDIA, ‘The assessment tools in the toolkit’, 27 November 2020, https://www.ndis.gov.au/participants/independent-assessments/independent-assessment-toolkit/assessment-tools-toolkit. 51 Craig Hospital Inventory of Environmental Factors, ‘CHIEF Short Form’, https://www.tbims.org/combi/chief/CHIEF_SF.pdf. 52 Guaranteed in s 3(1)(e) of the NDIS Act.
In the process of selecting appropriate tools, the NDIA evaluated over 100 “recognised and standardised tools”.53 One tool that was rejected by the NDIA was the Instrument for the Classification and Assessment of Support (I-CAN).
The I-CAN was developed by the University of Sydney’s Centre for Disability Studies (CDS) in 1998 and has subsequently been supported through empirical, academic research.54 Following consultation with CDS, SCIA has learned that the I-CAN is a strengths-based, person-centred assessment that has been developed directly based on the ICF’s domains. According to CDS’s website “more important is a focus on the actual supports needed and wanted to pursue a valued life”.55 This contrasts with strictly functional capacity assessments, which tend to focus on deficits rather than strengths.
In practical terms, the I-CAN addresses many of the concerns outlined above. Assessors receive a significant degree of information prior to the assessment, including any diagnoses and members of participant’s support team (family, carers, treating health professionals etc.). The assessment may be conducted over multiple sessions and is semi-structured and fluid, in order to develop a narrative of participant’s support needs, their relationships and goals and aspirations. Participants are also not observed and assessed while completing a task or activity, which may be a confronting aspect of the IAs proposed by the NDIA. Participants do not need to attend all or most of the session as many members of their support team will be involved in the assessment. The I-CAN also provides a statistical summary of a person’s support needs across the ICF’s different life domains and indicates the level and frequency of supports needed.56 The emphasis of the I-CAN is to understand a person’s life and support needs holistically, taking account of their medical diagnoses, strengths, environmental factors and personal goals and aspirations.
I-CAN assessors come from a range of professional backgrounds, including social workers, speech pathologists, OTs, physiotherapists and psychologists. However, all assessors must have a key understanding or experience with disability. Assessors receive initial training and accreditation by CDS and it is based on action-training, in other words assessors must themselves be assessed in action before they conduct the I-CAN externally. Assessors must also be re-accredited every 2 years. Participants have the choice of which assessor suits them best and can maintain contact with their assessor prior to and following the assessment.
The NDIA concluded that “the I-CAN was a strong candidate for assessing the support needs of a person (rather than functional capacity) however it is lengthy and the comprehensive assessment takes 5-10 hours”.57 This reasoning seems to be twofold: the I-CAN takes too long and is too comprehensive, and it focuses on support needs rather than functional capacity.
However, this reasoning is unjust and fails to appreciates the goals and principles of the NDIS Act, NDS and UNCRPD, which focus on a social model of disability and adopting a person-centred approach. The very first objective listed under s 3 of the NDIS Act is “(1)(a) …give effect to Australia’s obligations under the [UNCRPD]”. The UNCRPD recognises all people with disability as independent rights holders and acknowledged that disability “is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that
53 NDIA, ‘The independent assessment toolkit’, 4 March 2021, https://www.ndis.gov.au/participants/independent-assessments/independent-assessment-toolkit. 54 Centre for Disability Studies, ‘I-CAN’, Centre for Disability Studies, 2021, https://cds.org.au/i-can/. 55 Ibid. 56 An example of an I-CAN report may be found here: CDS, ‘I-CAN Version 6: I-CAN Individual Support Needs Report’, https://cds.org.au/wp-content/uploads/2020/04/Physical-intellectual-disability-example-report.pdf. 57 NDIA, ‘Independent Assessment: Selection of Assessment Tools’, September 2020, p. 78.
hinders their full and effective participation in society”.58 The NDS is similarly founded on a social model of disability and adopting person-centred policies, programs and services.59 Further, in s 4 of the NDIS Act, respect for the worth and dignity of people with disability is also an overarching principle. With these provisions in mind, examining the current toolkit it is difficult to understand how a series of closed-ended questions about what a person cannot do, rather than their strengths in different domains, reflects promotion of a person’s independence and sense of worth and dignity. As will be discussed in Section 4.1.1, answering an overwhelming number of closed questions related to their functional capacity can be a confronting exercise. For many people with disability this may trigger a sense that they are being viewed solely through the lens of how their impairment affects their function, which reinforces the outdated medical model of disability. The current toolkit does not adopt a person-centred approach to determine what a person can do in their environment, instead the focus is on a lack of functional capacity, caused by impairment.
Nevertheless, the I-CAN need not be used as a single tool in IAs. It can be used in combination with another concise functional assessment tool to better understand a person’s support needs according to their function and strengths. The benefits of the I-CAN cannot be ignored and rejected solely because of its lengthy nature or its foundation on a strengths-based, supports assessment, rather than strictly focussing on functional capacity.
Further, what is even more confounding and inconsistent is that another Australian Government Department with oversight of another disability supports program has chosen to adopt the I-CAN tool. The Department of Health’s (DoH) Disability Support for Older Australians (DSOA) Program will replace the existing Continuity of Support Program from 1 July 2021.60 As part of this program, independent assessment of a client’s needs will be undertaken where a change of need request involves additional support amounting to $20,000 or greater, or where DoH deems appropriate.61 The I-CAN assessment has been customised to the DSOA program, effectively adding a funding mapping feature to the original report (in order to align supports with DSOA’s Price Guide). CDS is undertaking a pilot of the I-CAN version for DSOA, which will run till the end of June 2021 (incidentally the same period as the NDIA’s second IA pilot). In light of the impact of the COVID-19 pandemic assessments are currently conducted via telephone interviews and video conference and other information is gathered by assessors via email.62 However DoH has noted that in future face-to-face assessments are a possibility.
As with the original I-CAN model, participants of the I-CAN version DSOA will provide assessors with as much information as possible about the participant and their support needs. Some of these details may be used to pre-populate the assessment tool. It is estimated that the independent assessment is “usually carried out over two sessions, depending on the complexity of the client’s disability and how much information can be provided in advance. It is anticipated that each assessment will take about three hours (2 x 1.5 hour appointments)”.63
While the cohort of DSOA participants is significantly smaller and older and the two programs are governed by different legislative frameworks, it is still inexplicable why independent assessments,
58 UNCRPD, Preamble (e). 59 Council of Australian Governments, National Disability Strategy 2010-2020, Commonwealth of Australia, 2011, pp. 16 and 23. 60 CDS, ‘I-CAN DSOA Project: I-CAN Version DSOA’, Centre for Disability Studies, 2021, https://cds.org.au/i-can-dsoa-project/. 61 Commonwealth Disability Support for Older Australians Program, ‘Program Manual: A guide for DSOA service coordinators Version 1’, Department of Health, February 2021, p. 27. 62 Ibid, p. 28. 63 Ibid.
used to establish a person’s disability support needs irrespective of age or disability, are introduced to both programs using different toolkits. The NDIA’s argument that the assessment is too lengthy is moot considering the customised timeframe proposed by DoH, and when the NDIA has been so emphatic during public consultations in noting that there is no upper time limit to NDIS IAs.
If IAs are universally adopted within the NDIS process, no tool will be a perfect fit for every NDIS participant or applicant. However, in context, it is very unclear why the I-CAN tool cannot be adapted to the NDIS to better suit and address the serious concerns already raised in this submission.
Recommendation 9: The NDIA should reconsider adopting the I-CAN assessment within its IA toolkit.
4. Exemptions to independent assessments
SCIA supports the current exemptions listed by the NDIA relating to risk and safety or if an assessment is inaccessible or invalid. However, other circumstances should be included on this list and the two current exemptions further clarified. This section outlines other circumstances in which an applicant or participant should be considered exempt from undertaking an IA:
4.1.1. Risk, safety and trauma
Many people with disability have been affected by trauma for various reasons and undertaking an IA can be confrontational and triggering. Ultimately, an assessor will be a stranger to an IA participant and this can cause reluctance, fear and disengagement for many and when the risk of harm is foreseeable, they should be made exempt. Also, it is inappropriate to categorise psychosocial conditions or trauma as severe before considering whether a person is exempt, a delegate should carefully consider the circumstance of any IA participant, and particularly those in which any form of trauma or psychosocial condition has been identified.
For example, applicants or participants who have been, or are affected by domestic violence, an IA poses a great risk to their sense of wellbeing, particularly if an assessor is entering their natural setting. Additionally, if a support person is suspected to be a perpetrator it is completely unacceptable for an applicant or participant to undertake an IA. Other such circumstances include where a person or their support persons experience drug and alcohol problems, homelessness or any others who are in vulnerable settings. Even in situations where an assessor has been trained in adopting a trauma-informed approach, it may still be inappropriate for a person to undertake an IA.
For people with ASD, the experience of undertaking an IA may be particularly harmful. Often, for those with a diagnosis they have previously undergone numerous tests and delegates should closely examine how a person has reacted in the past to such tests and whether they are likely to experience assessment fatigue or distress in a longwinded process.
4.1.2. Inaccessibility
Inaccessibility should be an immediate exemption. This may arise in numerous circumstances. For example, when an applicant or participant wishes to undergo an IA in a specific form, i.e. face-to-face, but there is no assessor physically available in that area to conduct the IA face-to-face, a person should not be forced to undertake an IA via video chat or on the phone. This is particularly relevant for those living in rural and remote areas. Without this guarantee, there would be a differential treatment of those living in these areas and serve as discrimination against a cohort that has already been identified as a priority group. Additionally, if it is impossible to arrange an in-person interpreter for a face-to-face IA session, but this is a preference for the applicant or participant (rather than a translator over the phone) an exemption should be allowed. Further, if technology poses a barrier to a person
undertaking an IA, perhaps due to computer illiteracy, and their only option is a face-to-face assessment, but this is impossible due to unavailability of an assessor, they should be exempt.
4.1.3. Invalidity
Accuracy and validity of results is a major aspect of achieving the goals of the introduction of IAs. For many people, as the IA relies largely on self-reporting there may be several issues that arise that would produce invalid results. For example, one participant noted that her family member’s ability to report on their functionality is severely impaired due to their acquired brain injury. Alternatively, another person noted that their support person was in denial about their spinal cord injury and would likely overestimate their functionality during an IA. These circumstances are inevitably going to produce invalid IA results. Additionally, when a support person cannot be identified or is physically unavailable to attend an IA, which is particularly relevant in current circumstances with COVID restrictions, an exemption should be made.
In cases where there is a concern about invalidity, adjustments could be made, if requested by an IA participant. For example, many people are concerned with the volume of questions asked during an IA and their ability to respond accurately to so many questions, even over the course of multiple IA sessions or with an unlimited timeframe. As one person noted, “It takes time to consider it, put it aside, think about it, reflect on it and get it right”. This may pose particular challenges for people with acquired brain injury, intellectual disabilities and cognitive impairments. Without accurate responses this will limit the accuracy, validity and reliability of IA results. As such, all participants should be offered extensive information and resources to understand broadly the assessment process, what to prepare for and the types of questions to be asked. If such an adjustment is not possible, but concerns still remain about an IA participant’s ability to accurately self-report on their functionality and environmental circumstances an exemption should be made.
4.1.4. People with recently acquired injuries
An IA will likely provide invalid or unreliable results for many people with acquired injuries. For many people awaiting discharge from hospital or rehabilitation centres, NDIS supports are required to return home. However, at this stage many people’s functionality is fluctuating as they are undergoing treatment in their rehabilitative journey. Additionally, the trauma involved in adjusting to a life with disability can cause great anguish and an IA can pose additional mental distress.
For those in hospital or rehabilitation settings, they often find it difficult to assess their own functionality as they have not returned to their natural setting or are aware of what supports will be most beneficial to them on their return. During an Engagement Project with SCIA members, many people with recently acquired injuries reported that “I don’t know what I need” and “I don’t know what I don’t know”. There is a great risk that people will not be able to return home if they do not have NDIS supports in place and this may greatly increase wait times before discharge, particularly when state-funded programs do not fill this gap in providing supports to return home. This cohort should not be forced into short- or medium-term accommodation against their will. Instead, people with acquired injuries should be allowed to submit their medical documentation from hospital or rehabilitation centres and then undertake an IA after they have developed more of a routine in their natural setting.
4.1.5. People awaiting discharge from an institutional setting
As above, others in institutional settings should not need to undertake an IA before receiving NDIS supports to allow them to return home, including, among others, those people with disability residing in correctional centres, juvenile justice centres and immigration detention.
4.1.6. Suspension of an IA
Finally, in circumstances in which an IA is in progress and a support person or assessor becomes aware that an IA participant is in distress, there is a positive duty to immediately suspend the IA. In these circumstances, it will be appropriate to allow an exemption when there is clear evidence that a person is being harmed by the IA process, even if there is no diagnosed psychosocial condition or other factor that was previously identified.
Recommendation 10: The list of IA exemptions should be open and include circumstances, among others, involving risk of distress to the IA participant and in which a person is yet to be discharged from hospital or a rehabilitation centre. Additionally, IAs should be suspended if the process is causing the IA participant distress.
Further, delegates should be flexible in assessing whether an applicant or participant is exempt from completing an IA, it should not be viewed as a fixed, ‘limited’ list of exemptions.
5. Implications of independent assessments on access and planning decisions
To date, there has been a lack of transparency as to how IA results will be used in the determination of access and planning decisions. It must be reiterated that while ensuring consistency of budgets across the Scheme is an aspect of maintaining the financial sustainability of the NDIS, the focus should always be upon supporting the disability needs of the specific person in their unique circumstances. It is important then to identify and understand the present concerns of prospective applicants, existing NDIS participants, their family members and carers.
5.1. Current concerns about the impact of IAs
It is clear from SCIA’s public consultations that the success of IAs rests on respecting the needs and wishes of IA participants and their support persons. The majority of those who have been consulted are highly worried, uncertain and sceptical about the introduction of independent assessments as it poses another ‘hurdle’ to accessing supports. For many existing participants there is a feeling that they have undergone so many challenges to establish a plan that they are satisfied with, that it is unnecessary to introduce a new tool that may produce information that they have already submitted. As one person argued: “My disability’s not going to go away, they’ve got all the information, aren’t they reading what they have?”. Many agreed, suggesting that IAs simply duplicate the medical assessments and reports they have already submitted or receive from their treating health professional.
Other people were particularly worried about the financial implications of IAs on their plans. One NDIS participant felt that “as long as both sides were open and honest…[but] if they’re counting dollars…then that could come back and hurt people”. A common theme among SCIA members is that a person with disability and their family and carers are the experts in their own experience of disability and identifying their needs.
5.2. Personalised budget tool
NDIA delegates should be wary of basing their access and planning decisions on a single IA report. There is a multiplicity of factors that affect prospective and current participants’ lives and in some cases these may not be quantified and neatly accounted for in a mathematical model that determines a person’s budget.
In light of this, it was concerning to hear that during a recent IAC meeting the Scheme’s Actuary had presented information on the NDIA’s proposed personalised budget tool (PBT).64 The PBT is a budget model or complex calculator that will assist in establishing consistency in decisions on the amount of money in participants’ plans and the provision of a plan budget estimate taking account of a person’s functional capacity, circumstances and support needs. PBT modelling should produce a budget estimate only. It is a starting point to understanding a participant’s circumstances, and many other factors should then be considered in increasing or decreasing their level of funding in the draft plan. The Meeting Bulletin also indicated that the PBT is undergoing a pilot, which is an important aspect if it is successfully integrated into the process, however all information resulting from the pilot should be made accessible to the public. SCIA similarly shares the IAC’s concerns relating to:
- Unconscious bias in the weighting of funding decisions
- Government oversight into the lives of participants
- Draft plans needing amendments
- Culturally appropriate assessments.65
If a calculator produces a particular sum, it is then the responsibility of a delegate to consider this figure in conjunction with a participant’s written statement of goals, access information, previous plans (if applicable) and other available records with the NDIA. It is only after this consideration that a delegate should release a draft plan. The planning meeting then presents the single most important opportunity for participants and their support team to assert their choice and control over their level of support. At this point they will also have had an opportunity to receive and review their IA results.66
During SCIA’s consultation with the NDIA, it has been asserted that the planning meeting does not involve a ‘negotiation’ over the level of funding a person receives, rather it is a time to determine plan implementation. This is a highly concerning prospect. It disenfranchises a participant’s voice and in cases where a person’s funding is lower than in previous plans (prior to the reforms), it is likely to produce conflict, or at the very least, significant confusion. It is recommended that negotiation of levels of funding should be an element of planning meetings. As such, participants and their support team should be able to consider IA results and bring evidence to support claims for greater levels of funding and receive support before a planning meeting to collate this evidence.
Recommendation 11: The NDIA should publish all information related to how delegates account for IA results when making access and planning decisions. This includes details of any internal operational guidelines or personalised budget tool.
Recommendation 12: Participants should have the opportunity to discuss the level of funding during the planning meeting.
6. Challenging or appealing the outcomes of independent assessments
The first section of this submission reiterated that the Tune Review found that a key protection for any form of independent functional assessment must involve incorporating a right to appeal the results of the IA itself (not just decisions listed under s 99 of the NDIS Act). Considering the restriction on participants and applicants in their choice of assessor or assessor organisation and the possible variability in the manner in which an IA is conducted, it is logical to conclude that a person’s access
64 Independent Advisory Council, ‘Meeting Bulletin’, 4 February 2021, https://static1.squarespace.com/static/5898f042a5790ab2e0e2056c/t/603308ce59eef05b520b5a96/1613957329204/Bulletin+-+Council+-+Meeting+6+-+4+Feb+2021+-+2021-02-08+-+PM+Approved.pdf. 65 Ibid. 66 This will be discussed in the following section.
decision or their planning funding budget may be affected by results produced by one assessor as opposed to another. In light of this possibility, it is only reasonable to appeal the results of an IA and seek a second IA.
If the right to appeal IA results is guaranteed, specific timeframes should also be enforced to ensure that an IA participant has the opportunity to make a timely, direct appeal of the IA results they have received. In other words, they should receive IA results prior to an access decision or the release of a draft plan. This timeframe should be integrated into the Participant Service Guarantee.
At present, it is still very unclear at what point an IA participant will receive their IA results – prior to access decision or release of a draft plan? Before or following a planning meeting? IA participants should be assured that they will receive the IA report soon after their assessment, and before any access decision or draft plan has been released. Then they should be informed of their right to appeal the results and the procedure to follow if required. Without this guaranteed appeal and timeframe, many IA participants will feel they have been treated unfairly and disenfranchised by the process.
Recommendation 13: The right to appeal the results of an IA should be integrated into the legislative framework to protect the interests of IA participants. Additionally, IA participants should receive IA results prior to a delegate making any access decision or draft plan.
7. Other related matters
7.1. Transparency and costs
While it is welcome that IAs will be cost-free for applicants and participants, there are many questions that remain regarding the funding arrangements for IAs. How assessor organisations and individual assessors are funded may have an impact on how an IA is conducted. For example, there are a few questions that have been raised by stakeholders:
- Will assessors be paid at a standard hourly rate or a single flat rate for each IA?
- Will assessors be paid a different rate if IAs are conducted outside of business hours?
- Will assessors be paid an additional amount if they incur travel expenses in reaching the location of an IA?
Additionally, it would be helpful to understand how the pilots were funded. Further, the NDIS’s Scheme Actuary should provide guidance on what economic models were used to understand the costing of IAs and whether this cost will need to be offset in other areas of the Scheme.
Recommendation 14: The NDIA should publish statistics on the costs of the IA pilots and provide insight into funding arrangements with assessor organisations.
7.2. Communications and accessibility
The effect of IAs will be a major change for all parties involved with the NDIS and if they are implemented, their success will in part be determined by participants’, their support networks, service providers, NDIA staff and others’ understanding of their purpose and impact on decision-making. Misinformation will frustrate the existing mistrust that exists in the community about their introduction. As such, with the introduction of any reform, there should be a set timeline to share information and practical advice to those whose lives will be most affected by the changes. At present, public consultations with the NDIA have resulted
in many unresolved issues, with representatives unable to answer questions and taking questions on notice. Before any national rollout of IAs, it is vital to conduct public sessions for this purpose, accessible to applicants, NDIS participants, their families, carers, health professionals and others.
Every communication and physical interaction related to IAs must always keep in mind the need for universal accessibility. All information relating to IAs should be written in plain English and shared with applicants/participants through existing networks and platforms including: the NDIS website, disability service providers, health practitioners, disability advocates, liaison officers (in hospital and detention settings) among others. This information should be made universally accessible through translation into multiple languages and different levels of Easy Read English. Multiple case studies could also illustrate the impact of the IA process on different people with different primary disabilities.
When undergoing an IA there are other accessibility issues to consider. For people with physical disability, assessors must ensure that the location of the IA is disability accessible. In terms of communication, ideally an assessor should be able to communicate in an IA participant’s preferred language. Admittedly, in the early stages of the rollout of IAs this may not be possible, but this should be a goal the NDIA’s Assessor Panel strives for. Additionally, assessors must be aware before an IA of an IA participant’s communications accessibility needs, such as required assistive technology or needs for documentation in Easy Read English, or if they have communications impairments. In other words, assessors should not rely on IA participants or their support persons to volunteer this information beforehand, they should proactively establish accessibility needs prior to the IA and implement appropriate adjustments.
Recommendation 15: Extensive public sessions must be held to disseminate information about the role of IAs and hard copy materials must be published in all accessible formats and disseminated to people with disability, their support networks and the wider disability sector, before any rollout of IAs or proposed changes.
7.2.1. What information should IA participants receive prior to an IA?
Participants should receive clear information regarding each step of the IA process, the name of the assessor organisation and, at the very least, information regarding the profession of their assessor and the training they have undertaken prior to the IA. This information should include information available on the NDIS website: IA Framework, assessment toolkit (specifically highlighting which tools may be used during an IA). Again, these should be made available in all formats, including Easy Read. IA participants and their nominated (or designated) support person should also be given the opportunity to converse with an NDIA delegate beforehand to clarify any questions or concerns they may have. One recurring question asked during the public consultation was whether when answering questions about functionality, people should reflect on their functionality when they have disability supports in place or their level of functionality when there are no supports in place. People’s understanding of how to answer questions can radically affect their responses. Additionally, many people have told SCIA anecdotally that they already find it difficult to self-report on their own level of functionality, so understanding the specific goals of questions will be crucial to producing accurate results.
The degree of choice IA participants have with IAs should also be emphasised. For example, they must be aware that they have choice over their support person, location, time and day, specific IA activity and the number of sessions that the IA may be conducted over. Further, they should be aware that they may submit a preference for the gender of the assessor, and as the Assessor Panel grows, other
specific preferences (for example, if the assessor identifies as being from a culturally and linguistically diverse background or age). There should not be any misconception among IA participants and support persons that there is a hard limit on the length of IAs. Such a misconception places a significant amount of pressure on IA participants and may lead them to give rushed, invalid responses. Additionally, as recommended above, IA participants and support persons should be clear that they have the choice to suspend an IA if a person becomes distressed or if the IA poses a risk to their physical or mental wellbeing.
7.2.2. What information should an IA assessor receive prior to an IA?
At present, it is very unclear what information assessors will receive prior to conducting an IA. During consultation, many people felt that it was rather better for assessors to have more rather than less information. However, before an assessor receives any information, an IA participant must first consent to its provision to the assessor or assessor organisation. Keeping in mind this, this information could cover the following details, including:
- Basic demographics: age, gender, education, ethnicity, marital status, employment, housing status;
- Whether a person is of Aboriginal or Torres Strait Islander;
- Whether an interpreter is required;
- Name of support person and their relationship with the IA participant;
- Details of a person’s disability/ies;
- Primary disability and, if applicable, other listed disabilities (particularly psychosocial conditions);
- Past medical reports and assessments relating to a person’s disability/ies;
- A general synopsis of a person’s individualised care plans in each area of support;
- Whether an IA participant has a history of trauma, domestic violence or homelessness; and
- Whether a person has completed assessments from the toolkit previously and the results from these assessments if available.
It is vital that IA participants feel that assessors have a basic understanding of their circumstances before meeting them. Assessors must be sensitive to IA participants’ situation, use appropriate language and avoid conflict by aggravating participants by repeating questions or seeking irrelevant information. This is particularly important as many IA participants will have undergone numerous assessments, including those from the IA toolkit, in the past and many already feel that IAs are unnecessary.
7.2.3. What information should participants receive following the IA and in what format?
The information that IA participants receive following an IA should be flexible depending on the preferences of the IA participant. All assessment results, including raw data (including answers to specific questions) and the assessor’s observational comments, should be made available on request. A summary report should also be produced in all accessible formats. Information from an IA report or raw results may be very triggering for IA participants and cause distress, which is why receipt of results should be consent-based. Additionally, many of the results and raw data may be very difficult to interpret and IA participants and their support persons should have the opportunity to speak to the assessor, member from an assessor organisation or an NDIA representative to discuss the results and how to interpret them. IA participants should also receive a summary report or the opportunity to request all assessment results prior to an access decision being made or before a planning meeting. In planning meeting, IA results can be a valuable tool in determining the supports a person needs, and
as such, IA participants and their support team (including support coordinators) should be able to familiarise themselves with the results before planning meetings.
Recommendation 16: IA assessors should receive information about an IA participant about their circumstances prior to an IA and IA participants should understand clearly the role of an IA and the choices they have in the IA process.
7.3. Possible amendments to the NDIS Act
DSS’s Information Paper made clear that “a new rule will make clear that NDIS funding is not to be used to purchase the service of a sex worker or devices solely for sexual stimulation”.67 While the legislative amendments to the NDIS Act have not yet been released, one possible avenue to introduce such a rule would be an amendment to s 209, re-categorising rules made under s 35(1)(b) to Category D, which would only require consultation, rather than agreement, with all State and Territory governments. If this amendment were made, the precedent it sets is highly concerning. Effectively, the Federal Government could unilaterally deny funding of supports, defining the boundaries of NDIS, without formal agreement from other State and Territory governments. This could de-legitimise the role of these governments in their contributions to the NDIS and it could be used as a political tool that could disadvantage all NDIS participants across Australia. SCIA recommends that such an amendment should not be proposed.
8. Conclusions on independent assessments
There is great concern among the disability community about the introduction of independent assessments. Every effort should be made to ensure that people with disability and their support networks feel they can safely participate in the IA process and that it will successfully contribute to their engagement with the NDIS. This will involve a focus on flexibility and an individualised approach to assessments. There needs to be ongoing engagement with people with disability, their family members and others regarding IAs and the IA Framework and toolkit should be revised in light of this feedback. Additionally, it should always be remembered that a person with disability and their support team understands their needs best. In relation to minimising costs to an applicant to the NDIS, there should be further consideration of possible duplication between evidence required to meet the initial criterion of a permanent disability and an IA’s results. In evaluating IAs, the five goals outlined in Section 3 should always be kept in mind. At present, in light of the concern among those directly affected by IAs it is again recommended that the national rollout of IAs be indefinitely postponed until people with disability have been fully consulted and the process has been empirically proven to be successful.
It is evident that the current expedited timeline will not afford people with disability and their support networks sufficient time to provide genuine input into the development of IAs. This is particularly concerning as any consultations should be ongoing, genuine and thorough if the NDIS is to be truly effective: “[Its] strength [should be] the disability community’s sense of ownership of it, driven in part by its extensive consultation processes”.68 Without consultation and genuine, responsive engagement, there is a greater risk of misinformation, distrust and risk of harm to prospective applicants and existing participants. Empowering choice and control should be at the heart of all NDIS
67 See Department of Social Services, ‘Improving the National Disability Insurance Scheme: Better Participant Experience and Improved Access and Planning’, p. 4. 68 Australian Civil Society CRPD Shadow Report Working Group, Disability Rights Now 2019: Australian Civil Society Shadow Report to the United Nations Committee on the Rights of Persons with Disabilities, UN CRPD Review 2019, July 2019, p. 5.
processes, as legislated in the NDIS Act. But it is the choice and control of participants, not administrators, that is paramount.
If the Joint Standing Committee requires further information or has any queries about the content of this submission, please do not hesitate to contact SCIA.
Kind regards,
Megan Bingham
Policy and Advocacy Officer
Spinal Cord Injuries Australia