5.1
This chapter sets out some of the particular concerns raised in the evidence about the tools and assessors proposed for independent assessments. These include:
Concerns raised by experts about the appropriateness of the tools;
Concerns that the tools may not be appropriate to assess impact on function due to certain disability types; and
Concerns that the tools may not be appropriate for use with certain cohorts of people with disability.
5.2
This chapter should be read alongside Chapter 6 which outlines other concerns raised about independent assessments by people with lived experience of disability and their families. These included what people who went through the trials said about their experience undergoing assessments with the tools, and general concerns that independent assessments and the tools selected would not be accurate for people with fluctuating or episodic conditions.
Appropriateness of the proposed assessment tools
5.3
Appendix 1 contains a table outlining key concerns raised by experts about the appropriateness of the specific tools the NDIA selected for independent assessments. These experts included peak organisational bodies for the allied health sector, and occupational therapists who provided name withheld submissions to the inquiry. It should be noted that research regularly identifies concerns about assessment tools, therapies, assistive technology and medicines, and the presence of these concerns does not necessarily mean that the tools are not fit for the purpose for which they were designed.
5.4
Broadly, some of the overarching concerns applying to multiple assessment tools included:
Construct validity—that is, 'the ability of the tool to actually measure what it is intended to measure', with concerns raised about the tools being used to measure functional capacity despite some not being designed for this;
The tools had not been developed for or validated for use to help determine funding amounts;
No evidence exists to suggest that any assessment tool is disability neutral, despite the NDIA stating in its submission that the 'suite of independent assessment tools have been selected to ensure they are disability neutral, so they can be used across all disability types';
The tools alone may not sufficiently document the person's disabilities, related comorbidities or risk for disability-related health needs;
The importance of assessors having appropriate skills, experience and expertise to obtain accurate results—whether in administering the tools, working with particular cohorts, understanding different disability types, or having a sufficient balance of all of the above—because interpretations made by practitioners from different disciplines may vary significantly, and that assessments carried out by allied health professionals acting outside their scope of practice would be 'clinically unsound';
The importance of assessment tools being informed by reports and other assessments from medical professionals to obtain accurate results; and
Many of the tools chosen do not take into account what supports a person already has that may help the person score well and, without which, they may score differently.
5.5
Further detail on these concerns is outlined below, with specific concerns about each of the assessment tools and their appropriateness for certain disability types and cohorts outlined later in this chapter.
Reliability and validity
5.6
Occupational Therapy Australia (OTA), in answers to question on notice, noted that the tools proposed 'have reasonably sound intrinsic measurement properties when used for the purposes for which they were specifically designed'. However, OTA argued that 'their reliability and validity is profoundly compromised when they are used for other purposes'. It further contended that:
OTA does not believe the NDIA is using the measures for the purpose for which they were intended. These tools were not designed to specifically assess functional capacity to inform funding decisions or plans, and they lack sufficient relevance, sensitivity or specificity to be used in this way.
5.7
OTA argued that no tools except the WHODAS-2 were designed to be used in a 'disability-neutral' manner, and the tools were valid only when used with the particular cohorts for which they were designed. OTA argued that complete 'reliance on self-report tools runs a high risk of under or over-rating functional capacity', and suggested that best practice functional capacity assessment should feature the following:
Clinical reasoning and interpretation by appropriately skilled clinician; and
The inclusion of carer, participant and existing provider perspectives and cultural considerations.
5.8
Enable Plus argued that 'the level where functional impairment occurs is not universally agreed upon'. It also contended that social 'desirability bias using questionnaires and structured interviews can lead to significantly higher ratings of functioning than found using objective measures'.
5.9
One occupational therapist questioned how an independent assessment could determine adequate funding levels for a participant 'without taking into account all the other reports and assessments completed by the participant's multi-disciplinary team'. They argued that the NDIA would 'only be getting half of the full picture of an individual's circumstances using the assessments in the toolkit'.
5.10
Dr Lauren Rice from the University of Sydney, who had ten years' experience administering Vineland, told the committee that she considered Vineland to be culturally inappropriate for Aboriginal and Torres Strait Islanders, based on experiences trialling Vineland since 2018 in the Fitzroy Valley on fetal alcohol spectrum disorders:
This project has given me firsthand experience of the difficulties in administering informant report measures in remote Aboriginal communities. I have administered both interview form and parent form of the Vineland with hundreds of families in Sydney and now with over 70 families in the Fitzroy Valley. I can confirm that, while this measure works well in Sydney, it's completely culturally inappropriate for use in Aboriginal communities…
I've seen how the Vineland can incorrectly screen out people with a disability from accessing the scheme simply because it's not culturally appropriate. We believe that the only way to create true equity is for government to invest in the development of culturally appropriate tools for use in Aboriginal and Torres Strait Islander communities.
5.11
Dr Rice admitted that her team had chosen 'to administer [Vineland] up here, knowing it doesn't work, just to prove the inappropriateness'. However, she acknowledged that her team 'chose the Vineland because it is the gold standard; it does work well in other places', over the Pedi-CAT which she described as 'psychometrically unsound'. She argued that according to an Australian study, Pedi-CAT 'doesn't measure what it's supposed to measure, and the research has shown that. I'm not quite sure why it was chosen in the first place'.
5.12
Professor Bruce Bonyhady of the Melbourne Disability Institute, who was one of the key architects of the NDIS, provided the committee with detail about the outcomes of a previous NDIA trial of assessment tools:
It became clear that trying to employ a single tool—as I say, WHODAS for adults and PEDI-CAT for children—just didn't give the information that was needed to draw a link between that information and reasonable and necessary supports. Once that became clear, we just abandoned it because there was no point continuing. My key point is that those two tools remain the primary tools…and nothing will have changed between when we did the trial of the support needs assessment tool and now.
5.13
In their initial submission to the inquiry, the Department of Social Services and the NDIA referenced academic endorsements of the initial Functional Capacity Assessment Framework paper as support for the approach and tools for independent assessments. Three of the academics subsequently wrote to the committee seeking to contextualise quotes used by the NDIA, arguing that they should not be viewed as an endorsement of the tools or later detailed proposals for independent assessments.
Use of WHODAS in the trials
5.14
Another occupational therapist reported that according to multiple 'reports from participants who volunteered to partake in the pilot project', the NDIA had changed the WHODAS 2.0 scoring system to a simple yes/no answer, rather than a range between 1 and 5. The occupational therapist argued that because of this, the 'WHODAS 2.0 has therefore lost its validity'. Similarly, Ms Roslyn Davis, an occupational therapist trained in administering the WHODAS, expressed concerns that in the trials, the WHODAS was not 'being administered or scored correctly according to the validated protocols', based on reports from participants that she had read and seen.
Importance of assessors' skills, experience and expertise
5.15
The committee also learned that the skills, experience and expertise of assessors may influence assessment outcomes, according to experts. For example, one occupational therapist stated that in her experience, 'there is much better alignment with the instructions on how to complete the questionnaire and with the person's functional ability' if she knows the person or parent/carer and is using a questionnaire like Vineland-3 because:
I can refer back to the instructions, probe and get further information. Someone who does not know the person cannot tell if their responses are unrealistic. They do not realise how much help they give or are given, as they are so used to it. These standardised assessments by self-report or parent report can be so variable and subjective.
5.16
Another occupational therapist provided an example of why they believed that the proposed tools would not be suitable for people with reduced cognitive capacity and would need an experienced health professional to administer them:
I asked a client who has autism and chronic fatigue syndrome how much difficulty they have with showering (a question on the WHODAS 2.0) and they said 'some difficulty'. I followed this up with the question how often do you shower? (this question is not on the assessment tool). My client stated 'I try to shower once a week but often go weeks without showering due to my fatigue'. I asked them why they said they only have some difficulty with showering and their answer was 'when I have the energy to shower I only have some difficulty'. This demonstrates that the proposed assessment tools are not suitable for individuals with reduced cognitive capacity. It also demonstrates the need for individuals to be assessed by experienced health professionals working within their scope of practice... An inexperienced health professional may not clarify the answers to the questions they ask... For example, a physiotherapist who is not trained in working with people with psychosocial disability may have taken my client’s answers at face value (and scored them 'some difficulty'). This would likely result in my client receiving inadequate funding to obtain support for assistance with showering.
5.17
One submitter, who appeared to be a disability support worker, gave the committee an example of the risks of asking questions without context or expertise, recounting a meeting that their client had with a Local Area Coordinator (LAC):
LAC: Do you have any trouble managing and budgeting?
CLIENT: Oh no, I'm really good with my money and don't overspend.
ME: How much of your income do you keep to spend and how much do you give to your mother.
CLIENT: Oh she gets most of it and I get to spend and budget with $20 per fortnight
ME: Who pays the rest of your bills then?
CLIENT: Oh Mum does and if I need extra for something we go and buy it together.
Please note the original answer implied a competency that the client just did not have and would have provided an incorrect assessment about the client's ability. It was only because we had a good knowledge of the client's actual situation due to having worked closely with her and her family for over 2 years that we were able to provide that extra insight.
LAC: Do you have any trouble getting out and about in the community?
CLIENT: I get out all the time and go lots of places.
LAC: Have you any problems taking public transport?
CLIENT: I prefer not to but I can take the bus if I need to.
ME: It wasn't always like this remember?
CLIENT: Oh yes I used to be frightened to leave the house even with Mum but working with SUPPORT WORKER I've gotten good at it and am looking to maybe do a TAFE course
ME: Do you go around by yourself?
CLIENT: Oh no I'd be too frightened if Mum, CASE WORKER or COUSIN didn't come with me. I can't remember which buses to take or how to get places although I do know my way around the local shopping centre without help now…
5.18
An occupational therapist, who had been involved in comprehensive occupational therapy functional assessments for participants in access applications and as part of ongoing treatment and plan reviews, argued that independent assessments in their proposed form omitted 'key Occupational Therapy professional and best practice components'. The OT argued that best practice should involve liaison 'and collection of background information from caregivers, other health providers, medical reports, discussions with schools, workplaces, disability service provider services or other stakeholders with the person's explicit consent'. The OT further contended that assessments should be carried out by those with expertise in disability types and sufficient experience, suggesting that advertisements had stated new graduates were welcome to apply:
As an Occupational Therapist with over 25 years' clinical experience in psychosocial disability, I would not deem to be the best professional to comprehensively assess someone with a primary physical disability. Neither would I expect a physiotherapist or OT who specialises in physical disability, to fully understand the complexities of someone with a psychosocial disability. And yet, the independent assessments are reportedly being done by any allied health professional, regardless of whether their experience matches the person they are assessing. Despite NDIA documentation stating assessors require 12 months' clinical experience, recent SEEK advertisements for these positions have been recorded stating ’new graduates are welcome to apply’.
5.19
Dr Lauren Rice told the committee that even 'in Sydney, I see variation in the way that Vineland is used'. She stated that 'the interview form requires a lot of experience and expertise in understanding disability' and emphasised that the person administering it should have an understanding of the disability involved.
5.20
The Marninwarntikura Women's Resource Centre and the University of Sydney raised concerns that professionals' clinical expertise would not be relevant when interpreting whether the scores of independent assessments were valid or reliable:
The proposed Independent Assessment process will minimise reliance on clinical judgement as it will only rely on a total score and not a clinician’s interpretation of the validity and reliability of the score. The process will also place what little clinical judgement is still present in the hands of inexperienced professionals. While the model intends to use allied health professionals, measures like the [Vineland Adaptive Behavior Scale] can only be completed by one professional per person with a disability. This means that a physiotherapist, for example, will be asked to assess not only the physical but also the cognitive, social and behavioural functions of an individual despite only being qualified to assess physical function. The physiotherapist's clinical training, experience and judgement is of little relevance when interpreting information about the cognitive, social and behavioural needs.
5.21
The Centre of Research Excellence in Disability and Health expressed concerns about the expertise of those administering assessments that were intended to be used by experts:
Many of the instruments are designed to be undertaken by clinicians specialised in the field. We are aware that participants and families who have already undertaken these assessments have indicated how underqualified many assessors were to assess functioning in areas outside their expertise (e.g., physiotherapist assessing speech). There are no quality assurance processes in place where performance of individual assessors is assessed.
5.22
Scope emphasised the importance of assessors understanding and having experience in particular types of disability to ensure the accuracy of the assessment and its outcomes, for the following reasons:
Many people with intellectual disability acquiesce because of a desire to please others, the perceived importance of the person asking the questions or because of the complexity of questions; and
People with Acquired Brain Injury may have poor insight into their disability, which may then impact how they respond to the questions.
5.23
One participant with autism outlined their personal experience in obtaining an assessment of the impact of their autism on their functioning:
I have been seeing an OT and psychologist for over 6 months now and they are both still trying to 'nut out' my overall functioning. I have an unusual pattern of very high and low capabilities across my skills—for this reason, my OT has not yet completed her assessment as she wants it to be as accurate as possible… There are certain aspects in my case that could easily be overlooked in a brief assessment—as a university student my language skills are quite high so people often assume I am high functioning in other areas but I'm not—for example, I still need help to shower myself. People generally make assumptions that either over- or underestimate my abilities.
Importance of a holistic assessment
5.24
The committee also heard that it is important that assessments are conducted in a nuanced and holistic manner. OTA raised concerns about whether those performing assessment would be in breach of their respective profession's code of conduct/ethics, given:
…the deliberately un-clinical nature of checklists requiring nothing more than yes/no answers, and the inability of assessors to apply their powers of clinical reasoning to the often nuanced nature of a person’s disability.
5.25
The committee received evidence from the father of a participant with schizophrenia. The father had been a Lifeline counsellor, the participant's mother was a qualified social worker, and the participant’s sister had a degree in psychology. The father shared his family's experience completing the WHODAS assessment:
We took our son through that: his mother did it, I did it and his sister did it. We did it completely independently… I have here the collated results of our assessment. The red line at the top is the aggregate family assessment of my son's disability, which is pretty high. The grey-black line at the bottom is his own personal assessment. You can see that there is a huge gap there, which is one indicator of why these tests are not appropriate. We need to delve into the reasons why.
If someone is, say, a paraplegic in a wheelchair and they want to get NDIS support, they are going to answer all the questions openly and show all their disabilities to maximise the chance of getting support. With my son, it is the opposite. For a start, he doesn't have sufficient self-awareness to answer properly. But it goes further than that: he doesn't want to open up. He doesn't want to acknowledge that he's got voices in his head or that his thinking is confused. He hides that. He has been put in hospital against his will. He is terrified of that. He is scared that, if he opens up, he'll be dumped into hospital. So you're not going to get valid responses very often from people with psychotic disorders.
5.26
OTA further called for the NDIA to incorporate support needs assessments as 'an essential step in the determination of participant plans and the budgets that support them' to help participants 'capacity-build, or compensate for the impairment'. It argued that by 'neglecting disability support needs, the NDIA runs the real risk of rendering the assessment process more costly in the long term'.
5.27
Professor Michele Foster from the Hopkins Centre at Griffith University questioned what incentives there would be for independent assessors to seek additional information, suggesting:
It says that they have the discretion to do that, but we would recommend that that needs to be much clearer, for consistency. We see how this could end up being simply a bureaucratic administrative process, and, given the questions around how independent assessors are funded and what key performance indicators they're going to have, that's questionable.
Qualified support for independent assessment tools
5.28
However, some evidence provided qualified support for some of the tools selected, while raising concerns about how they would be used. For example, the AEIOU Foundation noted one positive aspect of two of the proposed assessment tools:
Encouragingly, consideration of social capacity is included as part of the assessment tools proposed: Pedi-CAT ASD and Vinelands scales. Further information about the weighting of scores would help allay concerns that children with autism do not risk disadvantage under the proposed system.
5.29
Exceptional Bonds, while outlining significant concerns about the proposed changes, provided qualified support for some aspects of the reforms:
The use of recommended standardised assessment tools such as WHODAS 2, Vineland 3, PEDICAT provides more consistency in the basis of what a functional assessment needs to include. There is currently a wide variation in the scope and quality of functional assessments that are provided for NDIS participants. Making a consistent requirement for functional assessments to include at least one of the recommended standardised assessment tools provides greater accessibility for planners in understanding a person’s level of function and then make informed decisions about level of need for funded supports.
5.30
It should be noted that despite this limited support, the submitters mentioned above still did not support the introduction of independent assessments as proposed.
The NDIA's position
5.31
Mr Oliver Bladek from the NDIA argued that the value of using assessment tools is that they 'are disability agnostic…[and] would be completed equally such that the agency would receive consistently evaluated and assessed information upon which we would make decisions'.
5.32
The NDIA also, in answers to questions on notice, stated that function 'is not the sole basis for determining NDIS plan budgets', with other factors considered including the participant's age, disability type and existing supports.
Tools may not be appropriate for certain disability types
5.33
Despite selection of the independent assessment tools on the basis that they were ‘disability neutral’, the committee heard that the tools originally proposed for independent assessments were likely to be inappropriate in particular ways for people with certain disability types, including psychosocial disability, episodic disabilities, and rare and degenerative disabilities.
Psychosocial and episodic disabilities
5.34
Specific concerns were raised in relation to some of the proposed assessment tools in the context of psychosocial disability. A number of these broad concerns were captured by the Queensland Government in its submission:
Expert Queensland clinicians have assessed the proposed tools for relevance for people with psychosocial disability and concluded that, for adults and young people over 7 years of age:
these tools focus on activity impairments, which are not necessarily the main impairments in psychosocial disability;
the proposed independent assessment process involving an unfamiliar tester and short assessment time, and being based on self-reporting, is not conducive to accurate assessments of people with psychosocial disability;
these tools require a good source of collateral information from someone with working knowledge of the person; and
these tools require very careful training and interpretation, but assessments are often undertaken by people with limited training and limited experience in psychosocial disability and the unique complexities and barriers specific to a mental health context.
5.35
Others raised concerns about tools that required a participant to self-report. The Australian Association of Psychologists argued that self-reporting can be unreliable, particularly for people with psychosocial disability, who may try to mask or even deny their disability, and others raised concerns about self-reporting tools for people with other disabilities that affect cognitive function. As also described earlier in this chapter, submitters further noted that other tools, such as the Vineland-3, contained questions that may be difficult for people with psychosocial disability or reduced cognitive ability to understand.
5.36
Further, any ‘point-in-time’ assessment tool, when not reviewed in the context of a person’s day-to-day life, was also considered inappropriate to capture the full extent of psychosocial disabilities, as the episodic nature of many psychosocial disabilities meant that there was no guarantee that an assessor would see someone on a ‘good’ or ‘bad’ day:
Psychosocial disability, or mental illness, is often fluctuating, so people will have periods of relative wellness and periods where they are very ‘disabled’ by the symptoms of their condition. People with psychosocial disability who are relatively well at the time of the assessment may also worry that they are not ‘disabled’ enough on the day of the assessment to be eligible. This may also be the case for other people with disability that is not psychosocial in origin.
5.37
The Department of Social Services and the NDIA had argued that the tools had been assessed in developing the framework to ensure, among other factors, that they were ‘questionnaire-based, to avoid capturing a person's moment-in-time function, for example on a "good day" or with an unfamiliar assessor’. However, the Western Australian Association for Mental Health noted, in relation to the WHODAS 2.0, that this tool:
…only looks at the last 30 days of the individual's life (prior to assessment) and therefore cannot adequately capture the fluctuating and episodic nature of psychosocial disability in such a short period of time.
5.38
The questionnaire based approach posed further concerns for people with psychosocial disability. Recovery in Mind noted the potential for re-traumatisation of participants who are asked to repeat their experiences of disability during an assessment:
The expectation that a participant meets with a mandated assessor to complete standardised assessment tools carries a significant risk and may lead to distress and re-traumatisation. Recounting personal stories and highlighting deficits can exacerbate symptoms. Only highly skilled therapists with knowledge and training in trauma informed care should be conducting assessments for participants with psychosocial disability.
5.39
In addition to particular concerns related to the proposed tools, submitters also raised concerns that the proposed assessments would cause significant distress for people with psychosocial disability, and may lead to their disengagement with the NDIS as a whole. Particular concerns were raised in relation to the assessors being people unknown to participants, noting that many people with psychosocial disabilities may have also experienced trauma as a result of experiences with the healthcare system. For example, the Queensland Government noted:
Many people with psychosocial disability have histories of mandatory treatment and involuntary hospitalisation, or experiences with assessments delivered by unknown professionals that have resulted in loss of freedom or self-determination. Given this context, independent assessments have the potential to be a highly stressful, even traumatic, experience for this cohort, who may consequently withdraw from the process. Also, people with psychosocial disability may not have a support network able to organise their independent assessment, or to liaise with an organisation to arrange this, resulting in even less access to the NDIS for this already under-represented group.
5.40
Suggestions for a model of assessing function that may be more appropriate for people with psychosocial disabilities included:
Promoting choice for participants, including by introducing optional, rather than mandatory assessments, and allowing people to choose to have an assessment done by their current treating health professionals;
Tailoring approaches to people with psychosocial disability, including:
Ensuring tools used are appropriate for assessing functional capacity of people with psychosocial disabilities;
Ensuring that people conducting assessments have specific skills and experience with psychosocial disability;
Taking a recovery-oriented and trauma-informed approach to working with people with psychosocial disability; and
Providing for people with psychosocial disabilities to undertake preliminary interviews with assessors, which could be followed-up with referrals to appropriately qualified practitioners for complex cases.
Rare and degenerative disabilities
5.41
The committee heard independent assessments would exacerbate existing problems for people with rare and degenerative disabilities in accessing the NDIS arising from the lack of understanding of the implications of rare and degenerative conditions, including that people already struggle to find health practitioners who have knowledge of and/or expertise in their conditions.
5.42
The qualifications and experience of assessors were seen as a risk to inaccurate assessments, and the tools proposed were considered to lack the nuance required to take into account the context and complexities of rare and degenerative conditions. Rare Voices Australia explained:
Rare diseases are often complex, progressive, multi-system disorders with highly variable presentations from person-to-person. They can also be characterised by extreme fluctuations in symptoms. They cannot be adequately responded to with time limited, standardised assessment by anyone without specialised knowledge of both the disease and the individual.
5.43
Similar to concerns raised in relation to episodic and psychosocial disabilities, the fluctuating nature of some rare, and especially progressive or degenerative, conditions prompted concerns about assessing a person with disability at a single point in time. For example, in relation to multiple sclerosis, MS Australia explained:
MS is often unpredictable and fluctuating, so, as outlined above, it is essential that the assessment of the individual is conducted over multiple sessions to gain an accurate understanding of the functional impacts for the individual. Assessing an individual’s capacity as if it is a fixed, observable fact will not lead to accurate reporting or successful outcomes.
5.44
Submitters suggested that the proposed model could be improved for people with rare and degenerative conditions if people with these conditions were allowed to provide information on their functional capacity provided by their existing health care team. Other submitters also proposed using a specific cohort of assessors who would only undertake assessments of people with rare diseases, and that the NDIA should give clearer guidance or guidelines to allied health practitioners working with people with these conditions.
The NDIA's position
5.45
After receiving feedback that highlighted some of these issues in an early consultation paper on the access and eligibility policy for independent assessments, the NDIA clarified that the proposed approach would use a range of assessment tools, and could take place over multiple sessions:
Depending on their age and disability, new and existing NDIS participants will undertake 3 or 4 of these tools as part of their independent assessment. Depending on how many assessments you need, your assessment will probably take around 3 hours. It can also take place over a number of days. It isn’t something we want to rush.
5.46
During the committee’s public hearing in Canberra in May 2021, the Minister for the NDIS, Senator the Hon. Linda Reynolds CSC, told the committee that she had been reflecting on concerns raised about independent assessments and highlighted that concerns had been raised particularly in relation to assessments for people with psychosocial disabilities.
5.47
As outlined in Chapter 2, immediately prior to the announcement that independent assessments would not proceed, the NDIA flagged 'a preliminary list of changes' to independent assessments as they were conducted in the pilots, including tailored approaches to assessments for people who have a history of trauma or abuse.
Tools may not be appropriate for certain cohorts of people with disability
People with disability in rural or remote areas
5.48
The committee heard that there were a number of concerns with respect to the suitability of the proposed model for people living in rural or remote areas. SWAN Australia argued that some of the proposed assessment tools may be inappropriate for children in rural or remote areas:
Some of the questions in the assessments relate to things like: shopping carts, traffic lights and swimming pools which a child may never have been exposed to if they live in a rural [or remote] area. We do not feel the selected independent assessments tools are the most appropriate for people living in rural and remote areas as there will be a number of questions that will be irrelevant to this cohort of participants.
5.49
The committee also heard that increased stigma around mental health in rural and remote areas may exacerbate difficulties for people with psychosocial disabilities posed by the proposed model, including around having a stranger assess a person.
5.50
Suggestions for a model for functional assessments that would better serve the needs of people with disability living in rural and remote areas included providing extra funding for assessors to travel to rural and remote areas, and looking to existing programs that have had success in delivering services in these areas. For example, Occupational Therapy Australia suggested:
The Better Access to Mental Health (BAMH) initiative is an example of a program with proven capacity to deliver equitable access to mental health professionals in rural and socioeconomically disadvantaged areas. A 2011 study found very similar rates of service use for capital cities, other metropolitan areas and rural centres. When socioeconomic disadvantage was examined, rates were around 10 percent lower in the most disadvantaged areas when compared with the least disadvantaged.
Aboriginal and Torres Strait Islander people with disability
5.51
In their submission, the Department of Social Services and the NDIA stated that assessors will ‘have culturally safe approaches suitable for Aboriginal and Torres Strait Islander people, and take into account requirements for people from culturally and linguistically diverse backgrounds’.
5.52
However, submitters noted that the information that had been provided about the proposed model did not explain how assessments would be conducted in a culturally safe way. Concerns about lack of cultural safety were also raised in relation to questions of whether the proposed assessment tools were appropriate for Aboriginal and Torres Strait Islander people with disability, particularly in remote communities. Dr Lauren Rice, Research Fellow, University of Sydney, explained that was particularly the case with the Vineland test, as set out earlier in this chapter.
5.53
The committee also received evidence that other proposed tools were not appropriate for use in remote Aboriginal and Torres Strait Islander communities, including because the questions used are complex and sometimes culturally inappropriate, and that there were a range of reasons why informants being questioned using the tools may not provide accurate responses.
5.54
Submitters pointed to the need for any assessment tools used to assess functional capacity in this space to be culturally appropriate and psychometrically valid. The Marninwarntikura Women's Resource Centre and The University of Sydney further argued that assessors working with Aboriginal and Torres Strait Islander people with disabilities should also be especially skilled, not just in cultural safety, but also to understand how to consider information about a person from different and multiple sources:
People with a disability in remote Aboriginal communities are also less likely to have just one person as a primary caregiver who can complete an informant report interview, rather multiple family members care for them. So independent assessors need to be more experienced than in urban settings as they need to have the skills to gather information from multiple people who likely have little understanding of disability or disability services.
5.55
However, noting that there are already numerous barriers faced by Aboriginal and Torres Strait Islander people with disability in accessing the NDIS, submitters were worried that the proposed model for independent assessments would compound these existing barriers. The committee heard that in remote communities these barriers include:
…a large number of people with chronic, complex health and mental health conditions; fewer people with a confirmed diagnosis due to the limited health services, which makes it difficult to prove the permanency of the disability; poor health, mental health and disability literacy, making it difficult to discuss these topics; English as a second or often third language; a history of negative experience with government services; higher mobility, causing logistical challenges in connecting with people; and poor access to phone and reception, making telecare without support of community navigators impossible.
5.56
The committee notes that the review of the second pilot of independent assessments indicated overall satisfaction that questions asked were culturally appropriate. However, the small number of survey respondents from Aboriginal and Torres Strait Islander backgrounds (fewer than 30) suggests that further evidence would be required to remediate the concerns raised by submitters and witnesses who gave evidence for the inquiry.
People with disability from diverse cultural and linguistic backgrounds
5.57
The availability of accessible, free functional assessments was seen as something that, if implemented well, could mitigate existing barriers to accessing the NDIS faced by people from culturally and linguistically diverse (CALD) backgrounds and especially new migrants from refugee backgrounds.
5.58
The committee heard that people from CALD backgrounds were 7 per cent more likely to be found ineligible for NDIS, and that barriers faced by people from CALD backgrounds in accessing the NDIS included lack of engagement with mainstream service providers, stigma around disability, increased isolation, and lack of access to interpreting and translation services. Additional barriers in accessing and fully benefitting from the NDIS were also identified for people from refugee backgrounds and newly arrived migrants.
5.59
While recognising that some form of accessible assessment model could be helpful for CALD communities, submitters raised a number of concerns in relation to the independent assessment model as proposed, including that independent assessments would exacerbate the existing barriers faced by CALD communities in accessing and using the NDIS.
5.60
In particular, a number of submitters raised concerns about the cultural validation of the tools, noting concerns about the use of the various questionnaires for people who have limited English and who are from diverse cultural backgrounds. As explained by AMPARO Advocacy:
The use of standardised assessment tools and approaches may not consider the cultural context, including beliefs, values, language, and literacy of the person, nor adequately adjust for previous trauma and other life experiences.
5.61
Ethnic Communities’ Council of Victoria also noted that some of the assessment questions could be seen as disrespectful and confronting, for example questions about financial literacy or personal care. The Migrant Resource Centre Northern Tasmania further noted that people from CALD backgrounds may be reluctant to talk about their problems. Numerous submitters also stated that telehealth or virtual assessments were not appropriate for people for whom English is not their first language.
5.62
The NDIA indicated that participants would be able to be matched with assessors who spoke their language, or if this was not possible, that an interpreter would be provided. However, the committee also heard that there are a range of complexities around using interpreters in applying the assessment tools that had not been addressed. For example, Uniting NSW ACT noted that some people from CALD backgrounds in small communities may be reluctant to speak through interpreters, including for fear that interpreters would divulge information about a person’s disability and increase stigma. As described by AMPARO Advocacy, people therefore needed to be given a choice of interpreter:
Access to preferred interpreters, if requested, is essential if assessments are to be accurate and comprehensive. People will not talk about highly personal information with an interpreter who is: a community member they do not trust / who is the wrong gender / who speaks the wrong dialect / who is from an opposing community or perhaps the same small community / or who is an extended family member etc…
5.63
Further concerns about how interpreters would be used, and how people from CALD backgrounds may be reluctant to engage with the assessment process, were echoed by the NSW Government:
While the tender documents indicate that interpreters will be available, it is important to understand that many social constructs do not easily translate across cultural boundaries. For example, constructs of confidentiality are different in different cultures. In many cases, it will be a family member responding to a request for the person with disability to undergo an independent assessment.
Many people will be reluctant to engage in the independent assessment process, due to distrust of government agencies. This is likely to be exacerbated, for example, for people who have fled their home countries due to persecution by government agencies.
There is also a risk that people from CALD communities will under-report difficulties with daily tasks due to stigma. In some cultures, the concept of disability is associated with shame, guilt or punishment.
5.64
The Refugee Health Network of Australia (RHeaNA) raised further concerns about a lack of clarity in the proposed model around how the use of interpreters would be funded for independent assessments. Ms Donata Sackey, Member of RHeaNA, explained:
Access to accredited interpreters is fundamental to accessing any of these services—health, legal or disability services. We have excellent translating and interpreting services in Australia. I think we're one of the unique countries in the world to do this. However, there are emerging gaps in that system, in that there are issues around maintaining and engaging interpreters in a professional way. That is due to how interpreters are remunerated and how they're engaged in our system.
5.65
Submitters and witnesses suggested numerous ways that the proposed model could be amended to help prevent disadvantage for people from CALD backgrounds.
5.66
RHeaNA emphasised the need for cultural validation of assessment tools, and allowing people undergoing an assessment to bring along an appropriate support person, such as a case worker. The Ethnic Communities’ Council of Victoria argued that the NDIA or persons undertaking assessments should provide information to allow families to prepare for assessments, and offer a translated copy of the assessment report to the person with a disability or their family.
5.67
The committee also heard that assessments should not simply rely on the outcomes of the assessment tools, but also take into account collateral information. RHeaNA highlighted the example of including diagnostic health assessments undertaken for new migrants on arrival to Australia. RHeaNA argued that these public health assessments are ‘independent from the services delivered by the NDIS’ and that a ‘culturally appropriate refugee or migration focused assessment’ offers depth which should be included in any assessment process.
5.68
With respect to the practitioners undertaking assessments, submitters emphasised the need for assessors working with people from CALD backgrounds to have particular skills and cultural awareness, including understanding the importance of relationship building. The Ethnic Communities’ Council of Victoria highlighted that 'developing trust to disclose experience of disability requires time and skilled, culturally responsive practice'. Other submitters highlighted the need for assessors to adopt trauma-informed practice, and that the model should ensure adequate training and monitoring of assessors. The New South Wales Government recommended measures to ensure cultural competence, as well as ensuring adequate time be set aside for assessments to accommodate use of interpreters and build rapport.
5.69
Submitters made a number of recommendations in relation to the use of interpreters when undertaking functional assessments, including:
inclusion and funding of language services in the assessment model and tenders, including building extra time into the model for assessments to allow for use of interpreters;
ensuring interpreters are trained in the medical and legal concepts relevant to assessments; and
providing training for allied health workers or other practitioners undertaking assessments on working with interpreters.
People with disability experiencing homelessness or in prison
5.70
The committee heard that homeless people with a disability and people with a disability in the criminal justice system (including people with a disability in prison) face particular difficulties in trying to access and use the NDIS, often due to overlapping complexities with their disabilities and lived experience.
5.71
However, submitters highlighted that the proposed model failed to provide information on how the application of the proposed tools would provide adequate context to ensure particular needs and circumstances of people with a disability who are homeless or in prison would be met. For example, the committee heard there was a lack of information provided about how assessments were intended to be implemented in a correctional setting, which raised a number of concerns. The New South Wales Government explained:
Accurate functional assessments for people with an intellectual disability require corroborative information from a third party (such as a close family member or support worker) who has directly observed the person over a significant period of time. Most often this will not be available for assessments in custody.
If a decision is taken to interview a person in custody as the basis for a functional assessment, regardless of there being no access to corroborative sources:
many will have limited ability to accurately self-report on adaptive functioning, and many will not have the language and/or capacity to complete a functional assessment (this risk is even further heightened for children in custody who may be as young as ten years old)
because of its inevitable constraints and removal from the community context, the custodial setting does not provide an accurate model of the independent functioning of the individual outside of that setting
many offenders will not provide accurate information to strangers completing the assessment, or will be reluctant to proceed or cooperate without the assistance of a trusted support person. Custodial environments present additional barriers to trust and disclosure.
5.72
As many people with disabilities in these cohorts will also have psychosocial disabilities, similar concerns around the appropriateness of the tools were raised. For example, the committee heard that many people in the criminal justice system have experienced trauma including through the justice and healthcare systems and that mandatory assessments may cause people to re-live trauma. The committee heard that people with a disability experiencing homelessness or within the criminal justice system needed to be able to engage with professionals with whom a trusting relationship could be established in order for any assessment to fully capture the person’s experience of disability. In this vein, the Hutt St Centre suggested the creation of a complex needs or homelessness specific team of assessors to support this cohort.
The NDIA's position
5.73
As noted above, before the decision was made not to proceed with independent assessments in their proposed form, the NDIA also told the committee that it intended to consult and seek further feedback on the concerns raised around how independent assessments would impact particular cohorts of participants:
We'll be talking around both the state of the scheme overall, some of those questions around results, outcomes, affordability et cetera, and the quite specific improvements that could be made to a form of independent assessment... Firstly, we want to make sure we understand well the exemptions and alternatives that might apply for particular participants. Secondly, how we handle the issues around the choice of assessor and the setting up of the assessment appointment. Thirdly: lots of issues around the actual conduct of the independent assessment, including for different cohorts of people—how it's actually done. Is it done in as respectful and empathetic way as it can be but has to be? Fourthly, how do we make the best use of pre-existing information that the participants may well have and have access to?
5.74
In July 2021, the NDIA also announced preliminary changes to independent assessments as they were conducted in the pilots, including amending the assessor panel to ensure:
More experienced professionals undertake assessments for participants with more complex circumstances;
Access to complete assessments conducted by multi-disciplinary teams where appropriate; and
Links with service providers in remote/very remote areas, or those who specialise in working with Aboriginal and Torres Strait Islander and culturally and linguistically diverse populations.
5.75
Changes involving tailoring assessments for people with disability who are transitioning from institutional arrangements including in the justice sector or have complex support needs were also identified.