NDIA Accountability Project

Concerns regarding mandatory independent assessments and their impact on NDIS participants

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Submission

Joint Standing Committee on the National Disability Insurance Scheme - Inquiry into Independent Assessments

About Advocacy for Inclusion

Advocacy for Inclusion is a leading independent organisation providing dedicated individual and self-advocacy services and training, information and resources in the ACT. We deliver reputable national systemic advocacy informed by our extensive experience in individual advocacy and community and government consultation.

As a Disabled People’s Organisation, the majority of our organisation, including our Board of Management, staff and members, are people with disabilities. Advocacy for Inclusion speaks with the authority of lived experience and is strongly committed to advancing opportunities for the insights, experiences and opinions of people with disabilities to be heard and acknowledged.

Advocacy for Inclusion operates under a human rights framework. We uphold the principles of the United Nations Convention on the Rights of Persons with Disabilities and strive to promote and advance the human rights and inclusion of people with disabilities in the community. Advocacy for Inclusion is a declared public authority under the Human Rights Act 2004.

Contact details:

  • 2.02 Griffin Centre
  • 20 Genge Street
  • Canberra City ACT 2601

March 2021 Prepared and written by Stacy Ricks(), Team Leader Policy Authorised by Nicolas Lawler, Chief Executive Officer © Copyright Advocacy for lnclusi on Inc.

dil Advocacy for Inclusion acknowledges the Aboriginal and Torres Strait Islander peoples as Traditional Custodians of the lands where we live, learn and work.

Advacacy for Inclusia n respects and celebrates diversity of individuals, including those amongst the lesbian, gay, bisexual, trans, and intersex communities and we value and promote inclusion and diversity in our communities.

Executive Summary

  • People with disabilities and their representatives have not been sufficiently consulted or included in either the decision to introduce independent assessments or the development of the proposed model of assessments. The continuing consultation process has lacked a genuine commitment to be responsive to, and inclusive of, the views of people with disabilities.

  • The proposed model of independent assessments goes beyond previous recommendations and fails to implement the key protections emphasised in the recommendations. The proposed model of repeated mandatory assessments appears unnecessarily intrusive and punitive.

  • The proposed model of independent assessments is not likely to adequately address the issues which have been provided as justifications for their introduction. Independent assessments may do little to reduce current barriers and may simply shift the current difficulties experienced in accessing the National Disability Insurance Scheme to the next stage in the planning process.

  • The proposed model of independent assessments has the potential to increase adverse mental health outcomes and reduce dignity, choice and control for people with disabilities.

  • Contracting a new workforce of independent assessors which will require training, significant oversight and monitoring is not an efficient approach to access information which in many cases already exists through health and support professionals, especially when there may be a variety of alternative options which would allow for significantly more choice, control, and protection of the dignity and wellbeing of participants.

  • Several factors impacting independent assessors, including that they are contracted by the NOIA, the short time limits of assessments and the lack of specific disability knowledge or experience, raise significant concerns as to the ability of independent assessors to effectively and accurately communicate with and assess the functioning of people with disabilities, and for participants to be fully informed and comfortable with the assessment process.

  • Unproven and oversimplistic standardised assessment tools may not accurately and comprehensively capture the wide diversity of experiences of people with disability, particularly those with complex needs and multiple disabilities. The use of standardised assessment tools is also likely to be more inaccessible and disadvantageous to people with certain disabilities.

  • Comprehensive and transparent evidence of the outcomes of standardised assessment tools must be provided and disparities in assessment processes must be addressed.

  • Participants must be provided the full results of the independent assessments, and the opportunity to challenge the results if necessary.

  • The use of independent assessments risks disadvantaging the most vulnerable: those who are isolated or have experienced trauma, people with multiple, complex and fluctuating disabilities, people with intellectual and psychosocial disabilities, CALO and Aboriginal and Torres Strait Islander peoples.

Introduction

Advocacy for Inclusion (AFI) welcomes the opportunity to provide feedback tot he Joint Standing Committee on the National Disability Insurance Scheme inquiry into independent assessments.

AFI holds significant concerns regarding the proposed introduction of independent assessments and related changes to the National Disability Insurance Scheme (NDIS). The concerns raised in this submission are informed by lived experience, consumer and community organisation consultation and extensive advocacy experience.

This submission is also endorsed by the ACT Council of Social Service.

While AFI acknowledges there have been issues in the implementation of the NDIS, we do not believe the proposed model of mandatory independent assessments is an adequate or preferred response to address these issues.

AFI holds significant concerns that the proposed model is an inefficient, heavy-handed and rushed initiative. Introducing mandatory independent assessments to the NDIS has the potential to add considerable distress and trauma to the lives of people with disability and could cause further disadvantage to the most vulnerable of the current and prospective NDIS participants

The development, modelling, reasons and justifications for the introduction of independent assessments into the NDIS

Lack of Consultation

AFI has been disappointed in the lack of consultation of people with disabilities in the development and modelling of the proposed independent assessments.

The Senate Community Affairs Legislation Committee in October 2020 revealed that only 28% (145 people) involved in the first pilot of independent assessments completed the National Disability Insurance Agency (NOIA) feedback survey. Of the 28% who provided feedback, only 35 were NDIS participants, while the remaining responses were from carers.* This is not an adequate level of testing or consultation from which to rollout a policy that will affect 400,000 people.

The age of the participants is an important consideration concerning the participants’ level of independence and the development of self-advocacy skills. Therefore it should be noted that in this first pilot 86% of participants fell into what are commonly regarded as child and youth age ranges (7 - 24 years).* Only 14% of participants were aged between 25 - 64 years.* If the intention of the first pilot was to gain significant insight into the views and experiences of people with disabilities participating in the assessments, it seems unusual for 62% of the participants to be aged only 7 - 14 years old.* This also raises questions regarding the feedback process, and whether it was age-appropriate. The details of the feedback process, including the questions asked, do not appear to have been released.

* Commonwealth of Australia, Official Committee Hansard Senate Community Affairs Legislation Committee Estimates 29 October 2020, Canberra; See also Clun, R. ‘Just Not OK’: Only 6 per cent of NDIS trial participants completed survey December 23, 2020 https://www.smh.com.au/politics/federal/just-not-ok-only-6-per-cent-of-ndis-trial-participants-completed-survey-20201221-p56pbc.html.

* National Disability Insurance Agency, Independent Assessments, Pilot learnings and ongoing evaluation plan, September 2020 p 23.

* Ibid.

* Ibid.

Significant information has not been made available regarding the pilot programs,

including any explanation as to the disparity in the assessment of functioning which occurred with the use of the standardised assessment tools.

The ’Have Your Say consultation process by the NDIA5 provided very limited scope for genuine consultation in the requested feedback, as none of the questions regarded the decision to use independent assessments nor the appropriateness of a mandatory independent assessment model for the majority of participants. Despite this, AFI still chose to participate in the process and addressed these concerns outside of the questions provided.

AFI finds it concerning that just days after the consultation process was closed the NOIA announced the organisations making up the assessment panel, and stated that the feedback received from the consultation ’will help shape how these vital assessments will be implemented’6 as this seems to clearly indicate the intention of the consultation process regardless of the feedback received.

The 2019 Review of the NDIS Act (Tune Review), emphasised that an introduction of an independent assessment model ’will require extensive consultation with participants, the disability sector, service providers and the NOIA workforce.’7 It is AFl’s view that this has not happened, and that the apparent lack of meaningful engagement and consultation has resulted in a substantial reduction in choice and control and significant apprehension and distrust of the independent assessment model amongst prospective and current NDIS participants.

Beyond the Recommendations

AFI is concerned by the extent to which the proposed model of independent assessments seemingly goes beyond any recommendations for the inclusion of such assessment in the NDIS. Despite referencing recommendations from the Productivity Commission’s 2011 Disability Care and Support Inquiry and the Tune Review, the proposed scope of independent assessments goes beyond those recommendations, and the NOIA has not implemented the key protections emphasised in the recommendations during the development and rollout of the trials. Some of the key protections, which the Tune Review stated ‘need to be embedded as this approach rolls out’, and which do not appear to be incorporated into the proposed model include:

  • participants having the right to choose which NOIA-approved provider in their area undertakes the functional capacity assessment
  • participants having the right to challenge the results of the functional capacity assessment, including the ability to undertake a second assessment or seek some form of arbitration if, for whatever reason, they are unsatisfied with the assessment
  • the NOIA-approved providers being subject to uniform accreditation requirements that are designed and implemented jointly by the NOIA and appropriate disability representative organisations8

Mandatory Independent Assessments

The Productivity Commission also stated that “[h]ard’ assessments would be unfair on the client”9 and it is AFl’s opinion that the proposed model certainly appears ‘hard’ and therefore is likely to be unfair, particularly on more vulnerable participants.

Other organisations have commented that the proposed model of independent assessments has also gone beyond early proposals which they may have initially supported,70 again raising concerns that engagement has not been consequential or transparent.

Mandatory Independent Assessments

The Tune Review recommendation never proposed repeated mandatory assessments for every current and prospective NOIS participant. It explicitly states that ’functional capacity assessments would not always be required.’11 The power to require a participant to undergo an assessment was recommended to be ‘discretionary’ with ’clear operational guidelines for decision makers in exercising this discretion.’12

The Tune Review suggested independent assessments (with key protections in place) could be made available to people ’who would like to test their access for the NOIS or who require further evidence to support decision-making about the supports in their plan’73 - not that independent assessments be made mandatory for every participant regardless of whether they have already provided sufficient evidence regarding their support needs. 74 The Tune Review also stated that ’[f]undamentally, however, the success of the program will largely be dependent on … the willingness of prospective participants and participants to work with NOIA-approved functional assessors15.

Making independent assessments mandatory markedly impedes any possibility of a notion of ‘willingness’. Imposing mandatory independent assessments on prospective and current participants, including those who have repeatedly proved their eligibility, is likely to cause significant distress. People with disability will be subjected repeatedly to intrusive scrutiny and are being repeatedly forced to crawl through hoops to ‘prove’ their need.

Limited Time for Assessments

The limited time provided for independent assessments raises concerns as to the accuracy and completeness of results stemming from such limited interaction and observation. It has been reported that the NOIA tender relating to independent assessments stated that assessors are required to undertake a minimum 20-minute observation session, and that the average time taken for observation, assessment and report writing is expected to take 2.5-3 hours.16 The NOIA states “[i]t is estimated that the

Observation and Dignity of the Individual

Requiring a person with disability to be ‘observed’ in the manner proposed by the independent assessment model - by an unknown person who is not of the individual’s choosing, in order to justify support needs - does not align with the principle of dignity of the individual. Further, to have their disability supports hanging in the balance dependent on the outcome of this limited interaction can be extremely stressful. An imbalance of power inherently occurs in such an interaction, which can leave a person with disability feeling depersonalised and disembodied.

The potential for distress is likely to be heightened by the enforced nature of mandatory assessments, and the lack of choice and control an individual will have in choosing the assessor.

The intrusion of having an unknown assessor come to an individual’s home and observe them in their environment raises concerns regarding the privacy and security of home for people with disabilities, especially for those who may not have control over the decision of the assessor attending (such as those in group homes, or those whose carer will make this decision). Further concerns are held for individuals who have additional limitations in choice and control regarding who enters their residence and who is present for the assessment, including those in custody or mental health facilities.

While the NOIA has stated that an assessment can take place ‘wherever an applicant chooses’, it has not been made clear how an individual will be enabled to exercise choice in this regard, or whether they will be required to justify a request for a different location, as the NOIA has also stated that:

In most cases, interaction sessions will take place in the person’s everyday environment

In most cases, interaction sessions will take place in the person’s everyday environment. This will allow assessors to observe the participant or prospective participant’s interactions with family members or participation in routine daily activities. This will help assessors understand how the person’s disability affects their daily functional capacity against the six activities specified in Section 24 J(c) of the NDIS Act.

Not Trauma-Informed

The proposed model of independent assessments does not appear to be based on a trauma-informed approach. The impact of the potential trauma and distress caused by stringent functional assessments must not be minimised. Adverse mental health outcomes associated with such functional assessments, including increased suicide risk, have been recorded in other jurisdictions. As discussed further below, such outcomes have also resulted from similar policies and in the provision of other government services.

AFI is also concerned by the requirement for participants to repeatedly undergo independent assessments. This will increase stress and likely cause people with disabilities to fear they may lose supports at crucial life stages, or when requesting a plan review. Again, AFI notes that this appears to go beyond the recommendations of the Tune Review, which stated that ’functional capacity assessments would not always be required, for instance if a participant’s functional capacity is stable. Repeated mandatory assessments, especially where functional capacity is stable, do not seem efficient. For participants who have already been found eligible for the scheme, which is designed to provide life-long supports, requiring them to repeatedly undergo assessments appears unnecessarily intrusive and punitive.

Reasons & Justifications

AFI does not agree that the proposed model is likely to adequately address the issues which the NOIA has provided as justifications for the introduction of independent assessments.

The NOIA has suggested that independent assessments will “level the playing field’, such that financial, cultural, social, education and literacy factors do not contribute to delays or barriers to accessing the NDIS.’ AFI is concerned that independent assessments may do little to reduce current barriers, and will likely perpetuate disadvantage amongst vulnerable cohorts. Given that prospective participants will still be required to provide evidence of their disability and its permanence, participants are still likely to face financial burden related to sourcing further assessments. Particularly for certain

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disabilities, such as psychosocial, which often involve lengthier periods to diagnose and explore treatment options before they may be considered ‘likely to be permanent’, the introduction of independent assessments may do very little to relieve any financial burdens associated with accessing evidence of functional capacity.

Further as the independent assessments will not provide recommendations for supports, the only option for any individuals who want guidance as to appropriate therapies and supports seems to be to participate in the independent assessment and then additionally seek functional assessments which provide support recommendations at their own expense. The NOIA seems to suggest planners will discuss ways in which funds can be used,27 but this does not replace the expertise of professionals such as Occupational Therapists who assess support needs and make recommendations of appropriate therapy plans. If funding is provided but participants have not received any support recommendations, this will likely cause participants to experience increased confusion and difficulty in effectively using their funds, which may result in the underutilisation of plans. Again, those who are able to access and afford additional assessments and services, or are able to either independently, or with support, research therapies and supports will likely still have much easier access to appropriate supports and higher utilisation of their funding. Independent assessments do not appear to be an effective solution to these access issues, but instead have the potential to simply shift the current difficulties experienced in accessing the NOIS to the next stage in the planning process.

It has also been suggested that ‘using an independent assessor rather than a person’s usual health professional is also intended to address real or perceived bias.’ 28 While the NOIA has cited sympathy bias as a ‘potential’ risk, 29 it has not produced any evidence that supports the existence or impact of such bias in NOIS supports. It can also be inferred that any suggested ‘potential’ risk of sympathy bias is not significant, as the NOIA provides examples of circumstances in which this potential risk is ‘outweighed’ by the need to complete assessment processes.30

Suggestions of ‘sympathy bias’ impugns the ethics of health professionals. It is disappointing to need to argue this, but compassionate and experienced support by health professionals of people with disability should be encouraged, not disparaged. Biases certainly can exist, however health professionals undergo significant training and education in objectivity. Paradoxically, the NOIA has not stated how it will address the potential risk of disadvantageous biases in independent assessors, who will not necessarily have specific experience or knowledge of working with people with disabilities they are assessing.

It should be noted that there are circumstances in which the NOIA does approve of receiving direct evidence from a person’s usual health professional regarding their support needs, such as if that evidence may go towards proving a reduction in support needs: ’The applicant’s treating health professional may also be asked to provide evidence that early intervention supports would be beneficial and likely to reduce their future support needs.’31

The impact of similar policies in other jurisdictions and in the provision of other government services

The inscription of worry onto bodies is evident in the death of Elaine Christian, who was ‘found dead in a drain [and] had been worried about attending a medical appointment to assess disability benefits’… The inquest heard that Elaine, who died from drowning and whose wrists were covered in self-inflicted cuts, ‘had been worrying about a meeting she was due to have to discuss her entitlement to disability benefits’

Adverse mental health outcomes associated with stringent functional assessments, including increased suicide risk, have been recorded in other jurisdictions, such as in the United Kingdom with Work Capability Assessments and Personal Independence Payments. In Australia, Centrelink and Job Access participants have also had negative experiences with outsourced functional capacity assessments.

As well as causing distress, changes in assessment and criteria requirements for the Disability Support Pension (DSP) in Australia have significantly reduced the rate of

Concerns Regarding Independent Assessments

successful DSP applications, which in 2018 fell to less than 30 per cent of applications, with almost 75% of applications rejected in 2016-17.

AFI is concerned that the introduction of independent assessments could cause similar results in the NDIS as have been seen in the DSP and other jurisdictions, including increased stress and trauma through the assessment process, lower access or funding rates and increased use of external reviews. These concerns are not unfounded, given that:

 The main driver of the slowdown in DSP expenditure has been policy measures
 which have focused on stemming the flow of people onto the payment... In
  particular, new compliance and assessment measures ... have led to a sharp

decline in the number of people being assessed as being eligible for the payment.

Similarly to the standardised assessment tools to be used in independent assessments, The DSP requirements have been described as a ‘blunt instrument’.

The NDIS process can already be severely stressful and detrimental to the mental health of participants. AFI clients have experienced severe anxiety and distress through NDIS planning and review processes, including suffering panic attacks prior to, and during planning meetings. One AFI client with cognitive disability told their advocate that they were already worried and would have to start preparing for their next annual plan review, as they were exiting their annual planning meeting. For many AFI clients, interactions with the NOIA and concern over receiving adequate support has become an immense stressor in their lives. The NOIA should be prioritising reducing the distress being caused to participants, yet the proposed model of independent assessments does not seem to be designed as a trauma-informed approach. The NDIA’s claim that independent assessments will be provided at ‘no cost’ overlooks the significant cost such functional assessments can have to a person’s comfort, sense of control and wellbeing.

The reliance on independent assessments is also likely to increase the impact of an issue which is also commonly faced in DSP applications, concerning the interaction between functional impacts of disability and comorbid health conditions. Currently, lack of certainty regarding the source of functional impairment from co-occurring disabilities and health conditions is a driver of external reviews of DSP applications, and it is likely that reliance on single independent assessments (as opposed to sourcing expert opinion from health professionals known to individuals) will increase ambiguity and disputes over the interrelated impacts of co-occurring conditions.

The human and financial resources needed to effectively implement independent assessments

The prominence to be given to single independent assessments to determine functional impact devalues the expertise of health professionals. Many people with disability have spent years working with health professionals to determine and understand the impact of their disabilities, which results in a wealth of knowledge and expert opinion held by trusted professionals. Given the lack of evidence of sympathy bias, it is not clear that contracting a new workforce of independent assessors, which will require training, significant oversight and monitoring, is in any way an efficient approach to accessing information which in many cases already exists through health and support professionals. It is not clear why this approach was chosen when health and support professionals, who already possess comprehensive knowledge and the ability to provide reliable and accurate evidence, could have been provided resources and training to assist them to provide information to the NOIS in a consistent way.

AFI has worked with many consumers and their supports preparing Access Requests, and has often found that health professionals did not know what was needed for NDIS supporting evidence regarding functioning, or what was the best form in which to provide this evidence. In many ways, the language and formats used by the NOIS are not congruent with medical practice, as in the case of psychosocial disability (where the ‘recovery model’ language and practice of medical professionals does not align easily with NOIS criteria). Inconsistencies in the evidence being provided is unsurprising, given the lack of clear guidance provided to health professionals.

However the NOIA is now focusing on providing clearer guidance, including outlining ‘what [the NOIA] need from medical professionals’.41 Additional resources have also been co-designed with GPs.42 It seems that such an approach could have been taken to provide clearer guidance and resources regarding submitting evidence of functioning, 43 and would have provided an option to address inconsistencies in evidence which both utilised the expert knowledge held by trusted health professionals, and allowed for continued choice and control of people with disabilities as to who was intimately involved in their lives. AFI also notes that an ‘opt in’ model could have been utilised. It seems there are alternative options which would allow for significantly more choice, control, and protection of the dignity and wellbeing of participants. In terms of reducing financial burden on current and prospective participants, calls have been made to explore rebate options through Medicare for sourcing evidence of functional impact and assessments.

For a significant proportion of people with disability who already have access to services and established relationships with health and support professionals, the knowledge and ability to assess functional capacity already exists. As ‘mandatory’ assessments have not been recommended, this must raise the question of why the NOIA has gone beyond the recommendations and chosen a seemingly inefficient and unnecessary model.

The independence, qualifications, training, expertise and quality assurance of assessors

The NOIA emphasises the importance of the independence of its assessors, however the extent to which assessors can be considered independent is problematic, as they are contracted by the NOIA. Other initiatives involving similarly ‘independent’ assessors contracted to provide assessments, such as Work Cover, provide a multitude of examples of questionable outcomes, complaints of bullying, unfair treatment and distress caused to those being assessed.

The Tune Review stated that the success of independent assessments would be ’largely dependent on … those assessors providing truly independent functional capacity assessments, so they are not perceived as agents of the NOIA or a tool designed to cut supports from participants.’44

The qualifications and experience of those contracted to provide the assessments is also a concern as they will not be required to have specific disability knowledge or experience. The NOIA itself has listed ‘the most appropriate health professionals to provide the standardised assessments that are considered “best practice” in evidence’ for a variety of primary disabilities.45 This included professionals such as audiologists, neurologists, psychiatrists, ophthalmologists and Acquired Brain Injury health professionals, none of which have been included in the list of professionals who will conduct independent assessments.

Concerningly, in the admittedly few feedback responses in the first pilot of independent assessments, only 72% of those responding felt that the assessor was familiar with their disability.46 This must be considered in the context that this trial only included volunteers with a primary disability of Autism Spectrum Disorder (ASD), intellectual disability or psychosocial disability,47 and did not include participants with a diverse range of much less well-known disabilities. Presumedly the assessors taking part in the trial may also have been aware that the only volunteers involved would have the listed disabilities.

While the assessments are designed to not be disability specific, a lack of awareness and experience amongst the assessors raises significant concerns regarding their ability to effectively and appropriately engage with participants. AFI is especially concerned about the discomfort and stress which could be caused to an individual if they feel that, in the limited timeframe of the assessment, they also need to educate and inform the assessors about their disability to feel that the impacts they experience have been accurately understood.

The potential lack of specific disability experience and knowledge also raises concerns about the discretion of independent assessors, such as to choose which assessment tools are applicable and in their interpretation of responses, especially as the NOIA states that ’[t]he delivery of independent assessment tools can be tailored.’48 It also raises questions of the ability of assessors to facilitate effective communication.

The appropriateness of the assessment tools selected for use in independent

assessments to determine plan funding and The appropriateness of independent assessments for people with particular disability types, including psychosocial disability

AFI is concerned that the standardised assessment tools implemented by independent assessors, and unproven in their use to determine support needs, could be an oversimplistic and improper approach which may fail to comprehensively capture the diverse and complex support needs of individuals with disabilities. AFI is particularly worried that the use of such assessments risks disadvantaging the most vulnerable: those who are isolated or have experienced trauma, people with multiple, complex and fluctuating disabilities, people with intellectual and psychosocial disabilities, CALO and Aboriginal and Torres Strait Islander peoples. The NOIA’s trial of independent assessments thus far has not been sufficiently transparent or comprehensive to allay these concerns before rolling out independent assessments more widely.

There is significant concern that the standardised assessment tools will not be able to accurately and comprehensively assess the wide diversity of experiences of people with disability, particularly those with complex needs and multiple disabilities. It is not uncommon for people with disabilities to be treated by multiple specialists, receive varying diagnosis, and for disabilities to present with unique and atypical features.

As highlighted previously, independent assessments utilised in other services have been beset by claims of unfair treatment and impartial results. The 2020 Administrative Appeals Tribunal decision in Ray v National Disability Insurance Agency has already highlighted the worrying disparities which can occur between the opinions of an independent assessor and an individual’s regular supports, and highlights the risk involved with overly simplistic approaches to assessing disability.

Evaluation of Assessment Tools

To provide assurance that the results of independent assessments are accurately reflecting functional capacity of those being assessed, the NOIA must provide comprehensive and transparent evidence of the outcomes resulting from the use of standardised tools. In the pilot evaluation the NOIA states that ’[g]enerally, independent assessors found the instruments to be comprehensive and reflected a participant’s functional capacity.’49 It is concerning and illogical that the NOIA focused on the opinion of independent assessors as to whether the assessment tools were comprehensive, when presumedly, as independent assessors they have no other knowledge of the participant’s functional capacity. This is simply not sufficiently reliable as an evaluation process. The opinions of the participants as to whether the assessment tools provide an accurate reflection of their own functional capacity must be examined.

In the Pilot Learnings and Ongoing Evaluation Plan it is stated that:

 To the extent that the PED/CAT and Vineland 3 instruments provide valid
 assessments of functioning in line with the NDIS Act (Section 24 1(c)), 8% of

Implementation of Assessment Tools

AFI holds concerns about how the assessment tools will be implemented effectively to provide accurate results and how people will be informed and understand the assessment process.

Noting that ‘[d]epending on a person’s age and disability, three or four different assessment tools may be used’ this is likely to be more inaccessible and disadvantageous to people with particular disabilities such as psychosocial and cognitive disabilities who may experience higher stress and anxiety, and have more difficulty understanding the utilisation of multiple tools and how the assessment is being conducted. It is likely to be difficult for independent assessors who lack specific disability experience to ensure these participants are fully informed and comfortable with the assessment process.

The fact that the assessment tools ‘use a combination of interactions, discussions and questionnaires that take into account different settings and different times’ raises significant concerns regarding individuals who have difficulty with processing and comprehending abstract reasoning. Such tools could be inaccessible to individuals who

Experience Impaired Functioning Associated With Cognitive Impairment

experience impaired functioning associated with cognitive impairment, psychosocial and intellectual disability, and other disabilities that affect the ability to comprehend and effectively communicate abstract concepts such as ‘time’.

An AFI client and NDIS participant with cognitive impairment, Echolalia, complex trauma and social anxiety communicated in a way which included regularly answering questions in the affirmative (whether this was accurate or not), repeating words such as the names of medical conditions and disabilities, and providing ‘rehearsed’ or rote answers instead of spontaneous responses. This regularly caused significant miscommunications.

During an NDIS review the planner incorrectly listed the participant as currently undertaking higher education, when in response to the planner’s assessment questions the participant communicated that they were studying art. The planner clarified that this was higher education in follow up questions, and the participant affirmed that this was indeed correct. The planner accepted this, and the participant’s advocate had to clarify that the participant was actually referring to their attendance at a community art group and was not undertaking any further education.

Such miscommunications, which if left uncorrected would have heavily impacted planning decisions, happened repeatedly as the planner questioned the participant.

The participant also had difficulty communicating concepts such as time, and frequently moved from discussing the supports they currently did have, to describing hypothetical supports they wished they had, which was interpreted by the planner as being further current supports. The advocate was only able to identify this and clarify what was being communicated because they had spent months getting to know the participant’s communication style, exploring their support needs and clarifying these repeatedly on different occasions.

This participant experienced many other significant miscommunications. On one occasion the participant presented for a psychological assessment to support their NDIS review. The assessor was not aware of the client’s disabilities. The client underwent multiple assessments for autism conducted by a psychologist, despite having never had a suggested diagnosis of autism. While the psychologist who had conducted the assessments believed that the participant had communicated to them that they had an autism diagnosis and had requested these assessments, the participant was not aware of this and had not understood the purpose or results of the assessments. When this mistake was addressed with the psychologist, they expressed shock at the misunderstanding, stating that the participant ‘presented so well.’

AFI fears that independent assessments would be vulnerable to similar miscommunications, given their lack of specificity, as well as the lack of assessor knowledge of a participant’s particular disability.

This already appears to have been the experience of a participant during the pilot:

  '> For example, when asked if he independently takes care of his financial planning, his response was, "Yep!". But financial planning means different things to different people. Jack told the assessor about how he has the St George app. He knows how to tap and pay and how to check his balance. But'

Lack of Control/Participation

AFI is concerned that independent assessments will be over reliant on an individual’s supports to potentially take responsibility for such situations, which reduces control of the individual being assessed, and also places those who are isolated, vulnerable or have no close supports at further disadvantage.

The NOIA states that ‘[w]here no support person is nominated, we will initiate a process to help identify an appropriate person or persons if requested by the applicant.’\56 Though it is not clear, it does appear that it will be a requirement for another person to complete a part of the assessment on a participant’s behalf.\57 If a person is living alone or has no close supports, it is not likely any other person will be able to provide accurate knowledge of their functioning in such areas as dressing, washing, hygiene, and household chores. Many of AFl’s clients are isolated or have no supports, and would likely be disadvantaged by an inability to source a person for this assessment, or by being required to have a person involved who cannot give accurate information.

AFI is also concerned about the assessments which will be conducted without the participant in attendance, such as the Vineland-3 and LSP-39, or that a participant may be required to ‘leave the room’ so another person can answer questions .\58 Carers, family members and friends can give differing accounts of an individual’s needs. They may be motivated by a desire to focus on a participant’s strengths, to not cause hurt feelings, or a lack of knowledge (as an individual knows their own needs best). For those who are isolated and have no close supports, they may be significantly disadvantaged by the input of someone who does not know their needs intimately.

The implications of independent assessments for access to and eligibility for the NDIS

As previously discussed, a disparity in assessments was found in the first trial wherein 8% of those being assessed were found to have functioning in a typical range. From this it can be assumed that if these assessments are utilised a proportion of current NOIS participants may similarly be found to not have reduced functioning when independent assessments are rolled out, despite already being found eligible. As ‘[t]he amount of funding in a participant’s plan will be based on their functional capacity as determined through an independent assessment’, it could be assumed that this could result in reduced funding, or potentially participants’ access being withdrawn.

The NOIA has stated that ‘[f]or most people, a significant part of their funding will be based on the outcomes of their independent assessment.’ This suggests there will be very little ability to compensate for an assessment if it is not accurate, or has overestimated functioning (the potential for which has been indicated and unaddressed in the first pilot evaluation). This raises concerns for the significant impacts that may result in funding. As raised earlier, independent assessments do not provide recommendations of supports. The NOIA has indicated that planning conversations will be used to help participants ‘to consider how best to use their funds’. NOIA planners are not an adequate replacement to provide support recommendations, and people with the financial ability and choice may still choose to access therapy assessments to guide the use of their NOIS funding, while others may face confusion as to how to appropriately and effectively utilise their funding without recommendations. This may result in an increase in underutilisation of plans. Again, people with particular disabilities such as cognitive or psychosocial disabilities may experience increased difficulty with a lack of support recommendations.

Given the small pilot and limited information provided, AFI is wary of assuming potential implications on planning and funding, though some concerns are raised following the pilot results. If funding is mostly aligned with independent assessment results, then the results of 202 independent assessments undertaken prior to scheduled plan reviews in the first pilot showing that ‘71% of pilot participants have a high level of function, 16% have a medium level of function and 13% have a low level of function’ may provide some indication that funding amounts may broadly align with these results in the future, in such that 71% of this cohort may generally expect a lower level of funding (taken in context of the first pilot program, and the particular disabilities which were assessed). As this cohort were picked as representative of the largest cohort in the NOIS, corresponding funding dchanges could have significant impacts for a large number of participants. AFI would

The circumstances in which a person may not be required to complete an independent

assessment

AFI does not support ‘exemptions’ as the requirement for independent assessments to be mandatory is not supported. However, using the NOIA suggestion of considering exemptions on the basis of risk and safety, AFI has identified a number of ways in which the process of independent assessments may be likely to ‘do more harm than benefit to the individual’.64 The adverse mental health outcomes of stringent functional assessments and reduction in dignity, choice and control of people with disabilities must be acknowledged and considered in the context of mandatory independent assessments going beyond recommendations, not being the only option for assessing functioning and not having been sufficiently trialled and evaluated. AFI would also suggest that the NOIA should also be aiming higher than a ‘do less harm than benefit’ standard, to achieve a goal of doing no harm.

The circumstances in which such assessments may do more harm than benefit to an individual are numerous, and as exampled previously, could include people with psychosocial or cognitive disability, people with communication difficulties, people with limited or subjective supports, people who are isolated and people who have experienced trauma.

Following the recommendations of the Tune Review (which never devised of ‘exemptions’ as mandatory assessments were not recommended), would also suggest that there are further circumstances in which people would not be required to undertake functional capacity assessments, including if their functional capacity is stable.65

An exemption process would need further clarification and guidelines. For example, an individual who has experienced trauma may well experience more harm than benefit from the proposed independent assessment model, which does not appear to be trauma-informed. Such an individual should not then be required to justify a request for an exemption (for example, by providing evidence that they have experienced trauma).

While the NOIA has stated that ‘[t]he delegates decision not to grant an exception for an independent assessment will not be a reviewable decision’,66 NOIA representatives have stated in a recent community consultation session that this will not be the case. Formal clarification of this matter is required. This decision should be a reviewable decision to allow any semblance of transparency and fairness in this decision.

Explanation Of The Access Decision

It Is Not Clear When Participants Will Receive This Summary, Or If They Will Ever Be Provided The Full Results.

The full results of an independent assessment must be shared with the participant, prior to planning meetings to allow them the opportunity to understand and challenge the results if necessary. While the NOIA has stated that the results of independent assessments will not be reviewable, participants must have some option to contest the results. This was a key protection highlighted in the Tune Review:

  participants having the right to challenge the results of the functional capacity 
 assessment, including the ability to undertake a second assessment or seek 
some form of arbitration   if, for whatever reason, they are unsatisfied with the 
 assessment

Further it must be clarified if the full results of an independent assessment will be made available through disclosure of documents if a participant chooses to go to undertake an external review.

The NOIA must also take a trauma-informed approach in providing results to participants. The results may potentially be distressing and confusing to participants, who may not have supports in place to assist them. Results of such assessments may usually be presented and discussed by a health professional an individual has an established relationship with. In mandating independent assessments, the NOIA will have a responsibility to support participants and not cause them harm in delivering the results of the assessments.

                     Any Other Related Matters

AFI notes that the NOIA has begun offering reimbursement payments to individuals participating in the independent assessment pilot. AFI is aware that many people with disabilities have expressed mistrust in the pilot programs along with significant concerns at the introduction of mandatory independent assessments. With regard to the Tune Review statement that ‘[f]undamentally, however, the success of the program will largely be dependent on … the willingness of prospective participants and participants to work with NOIA-approved functional assessors’, a hesitance of people with disabilities to participate in the pilots should provide a significantly concerning indication of the potential success of the implementation of the proposed independent assessments. AFI believes a lack of willingness to engage in the pilot program by people with disabilities emphasises the immense need for the NOIA to transparently and meaningfully engage with people with disabilities with the intention of co-designing solutions to adequately address areas of need within the NOIS.

Conclusion

AFI holds significant concerns about the proposed introduction of mandatory independent assessments, and the risk they pose to people with disabilities. The NDIA’s recent responses to consultation, the continued progress towards implementing the independent assessments and the concerns which have been raised regarding further potential reform to the National Disability Insurance Scheme Act 2013 indicate there is an urgent need for the NOIA to reconsider both the rollout of independent assessments and the further proposed changes to the NDIS scheme. Meaningful engagement with people with disabilities and their representatives is required to ensure development of reform that adequately and appropriately addresses need in the NDIS, without compromising the choice and control, and wellbeing of people with disabilities.

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