Submission to the Joint Standing Committee on the National Disability Insurance Scheme

Inquiry into Independent Assessments

I thank the Joint Standing Committee on the National Disability Insurance Scheme for offering the opportunity to make a submission on the current proposed changes under the Independent Assessment framework.

The terms of reference detailed by the committee highlight several areas of concern that have not been adequately addressed by the agency, both in the proposed implementation of Independent assessments but also in the joint DSS and NDIA response to this inquiry (submission 13)₁.

In the joint response the DSS and NDIA highlights several areas that the Agency are aware of, that has influenced the differences identified in equality, yet there have been no attempts have been made to address these issues. This submission will critically evaluate the submission by the Agency, the Independent Assessments proposed framework and current novel systemic issues within the NDIA that are contributing to the need for fairer access and plan package amounts and should be addressed prior to the introduction of independent assessments.

The committee published a list of 12 terms of reference. This submission will cover the following 11.

Terms of Reference:

(a) the development, modelling, reasons and justifications for the introduction of independent assessments into the NDIS;

(b) the impact of similar policies in other jurisdictions and in the provision of other government services;

(d) the independence, qualifications, training, expertise and quality assurance of assessors;

(e) the appropriateness of the assessment tools selected for use in independent assessments to determine plan funding;

(f) the implications of independent assessments for access to and eligibility for the NDIS;

(g) the implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports;

(i) opportunities to review or challenge the outcomes of independent assessments;

(j) the appropriateness of independent assessments for particular cohorts of people with disability, including Aboriginal and Torres Strait Islander peoples, people from regional, rural and remote areas, and people from culturally and linguistically diverse backgrounds;

(k) the appropriateness of independent assessments for people with particular disability types, including psychosocial disability; and

(l) any other related matters.

Appropriateness of Assessment Tools

The NDIA has nominated a handful of assessments to assess an individual’s functional capacity to determine whether they meet the criteria for entry as a participant, and for continued supports between each review. The NDIA has designated Vineland 3 Domain Scale as one of these. A recent Australian study by Milne, Campbell & Cottier (2019)² found that this was not the most effective assessment. This study assessed the Vineland-3 with the PEDI-CAT in young children. The authors stated that although the Vineland 3 Domain Scale was more sensitive than the PEDI-CAT, they stated that the complete comprehensive Vineland 3 subscales with the Domain scales showed the most significant results. This was recorded by the PEDICAT identifying 32% of participants requiring substantial supports, the Vineland 3 Domain Scale identifying 40% and the Comprehensive Vineland identifying 59% in the same sample. Of concern, they also identified that the PEDI-CAT is susceptible to flooring effects; where the minimum scores mask impairments in the domain of self-care. The NDIA has selected both the PEDI-CAT and the Vineland 3 Domain Scale as tools in the Independent Assessments which according to peer-reviewed literature are not the most reliable in identifying the level of supports people may require. How can the NDIS justify not using evidence-based approaches to identifying functional disability, especially an area identified in the NDIS Act.

Another study investigating the validity of scales measuring cognitive ability and adaptive behaviours also found that when assessing people with intellectual disabilities, and subpopulations with neurodevelopmental disorders, that current scales have significant limitations (Hessl, Nguyen, Green, Chavez, Tassone, Hagerman, Schneider, Reiss, & Hall, 2009)³. In this study the authors identified flooring effects in up to 94% of participants, with a genetic condition and translation of scores into standardised formats was erroneous as the scales were originally developed for neurotypically developed peers. The authors stated that standardised scoring was problematic as this exacerbated the flooring effects in the data. It was suggested that normative data be used instead of standardised scoring. This is concerning as the agency has selected the standardised tools based on life stages as opposed to condition or area of impairment. These tools should not be used on some populations regardless of life

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stage, especially noting the aforementioned study highlighted concerns with disability- specific validity.

  The Agency has engaged in a non-robust and non-scientifically appropriate process to

identify the best tools to assess people with disabilities. It also highlights the Agencies move to compartmentalise disabilities to a “tick box” exercise. Disabilities and their respective conditions or causes are highly co-morbid and therefore so is the presentation (real-life functional impairments) and can therefore vary between even those with similar conditions. The aforementioned study (Hessl, et al, 2009)³ stated that even among those with the genetic condition there was a meaningful variation between individuals with the same condition that was concealed by the use of standardised scoring. How does the agency assess someone with one assessment through a single professional who is probably unlikely to know the effects of the participants’ individual conditions or disorders that according to the peer-reviewed literature do impact their functional disability but are not measured by an assessment they are contractually obliged to use as part of the proposed framework.

  Although the agency has stated in their submission that they are moving away from

diagnosis or condition, why must participants or prospective participants provide information of what their “primary” or “secondary” disability. The Agency has stated that they will still rely on “primary disability” in determining which assessments are conducted as part of the independent assessment¤. This means a scenario such as a participant with Cerebral Palsy or a similar condition who also has Autism, and that has Autism listed as their primary disability will not be assessed with the mobility assessment tool regardless of having a condition that significantly affects mobility. Unfortunately, there is an incorrect presumption, which seemingly is dependent on the agencies entrenched use and affirmation of ‘Confirmation Bias’; that people with disabilities can only have one primary disorder that affects them the most. Confirmation bias is an unconscious psychological phenomenon where a decision maker only seeks information that supports their personal beliefs while disregarding anything that contradicts that belief.

  Although I have autism I also have a genetic condition that further exacerbates the

level of impairment, in all domains across numerous diagnoses I have, which is also affected by another condition that affects motor planning, motor coordination, motor sequencing, and causes muscle fatigue. This means I do not have one primary disability, on the contrary I have several conditions which are all equally significant and impact various areas of my life, such as self-care, socialisation, mobility etc. The impact of these collectively is what disability was defined as in Mulligan v NDIS, 2015 with the Federal Court ruling this is how the NDIS Act should be interpreted. This arbitrary determination that people can only have one primary disability means the agency does not actually understand disability or the complexities of co-morbidities that can be present. The agencies use of primary and secondary disabilities does nothing other than reinforce a presumption that the impact of these other disabilities are not as important as the primary disability, and that the agency is only concerned with the diagnosis as opposed to the functional disability. It is crucial in identifying this as the finding in Mulligan v NDIS was that disability is defined as the total combined functional impairment, not the conditions participants have been diagnosed with. Why does the Agency continue to assess participants needs on the name of their diagnoses in their ICT system and their calculation of their typical support packages and for Independent Assessments scale selection? It is fair to state that certain diagnoses mean that participants meet the minimum criteria set out in S24 & s 25 of the NDIS Act, but once you are accepted as a participant especially under the disability pathway it has been established that you will have lifelong substantial functional impairment in at least one domain. It is no longer relevant

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what condition someone has, it is the level of impairment, unless it is required for Health- to support this claim. related Disability Supports, such as Dysphagia Rehabilitation.

     I have been told numerous times that the NDIS will only fund supports for my

Autism. Autism is not my functional impairment; yet the Agency relies on this when calculating my Typical Support Package and then questions why I need supports with mobility or eating as Autism is listed as my “primary disability” and doesn’t usually affect these other domains. The NDIA has suggested the rationale for the proposed independent assessments is to provide consistency and fairness for people in similar circumstances. This is not possible, especially noting many conditions are spectrum disorders which by their very nature emphasise the variation among those with the same diagnosis. Even among those with the same genetic condition I have, are also affected by gene dosage effects. Gene dosage is where genes within the duplicated or deleted chromosome which can be affected by the additional/absent gene in the corresponding chromosome as it creates a cumulative imbalance. The Agency believe this is medical, however these genetic aberrations have real- life functional implications. If it wasn’t for particular phenotypical expression I would not have been screened for a genetic disorder. If children didn’t have specific intellectual deficits, genetic tests would not be conducted; to state this is medical is crass and undermines disability and reasonable and necessary supports for those with lifelong disabilities.

   Martin Hoffman NDIA CEO has publicly stated: "If you’ve got a similar functional

capacity and similar life circumstances, you’re going to get a similar budget“. But what defines similar? Is similar the primary disability, is it the score you get on the assessments used, a combination, or are age-based presumptions included? Does similar include full functional assessments conducted by competent and qualified professionals who are not part of the independent assessment process? Does similar life circumstances include an objective assessment of environmental factors such as a participant’s family or home situation. The level of informal support required does not appear to be assessed as part of the independent assessment framework. A single parent with multiple children who are all NDIS participants with no informal supports could be assessed as requiring the same level as a family with one child with a disability who have many informal supports. The NDIA have been extremely vague on their definition of similar. The NDIA have stated that assessment tools will be “matched to life stages”. This is not evidence based, and against the recommendations in peer-reviewed literature of the limitations in certain subpopulations. The NDIA has stated that the assessments used are based on your age, not the disability, or the condition which you have; of note an assessment will be used to assess you even if you have a condition that the assessment tool has not been validated with, or one that has been proven as not a reliable or valid measure.

  The agencies assessment of valid measures included analysing reliability, structural

validity, internal consistency, cross-cultural validity, criterion validity and construct validity. However, no analysis was given to the structure or wording of the individual questions. In addition the Agency specified that self-reported questionnaires were excluded5 regardless of whether they are internationally recognised as scientifically robust such as the ABAS-3. Does the agency believe that all participants will malinger? It is worth noting here that if a physiotherapist is sent to assess someone with psychosocial disability, as has been reported by pilot participants, then the professionals will be acting outside of their scope of practice and may not be able to professionally make judgements of whether participant’s are malingering or not. The removal of self-report measures is also concerning as an Australian citizen with a disability, especially noting Australia’s obligations as a signatory of the Convention on the Rights of Persons with Disabilities (CRPD)6.

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Article 25of the CRPD states that:

“States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation. In particular, States Parties shall:”

Article 25(b):

“Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;”

Article 25(d):

Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;

Article 25 is important in recognising the NDIA’s attempt to remove the self-

autonomy, dignity and the requirement of health professionals to provide the same level of care to those without disabilities in the assessment of functional capacity. If I did not have a disability, assessments that use self-report measures are an acceptable and widely used psychometric tool, however purely because I have a disability the NDIA has banned the use of self-report measures favouring assessments that rely on assessors’ recording the information. Although this may be needed for some disabilities, for others it is a degrading experience, especially when they and their current treating health professionals understand their disability compared to the proposed independent assessor who in some cases would never have heard of it.

Furthermore Article 26 of the CRPD states:

“States Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services, in such a way that these services and programmes:”

“(a) Begin at the earliest possible stage, and are based on the multidisciplinary assessment of individual needs and strengths;”

The introduction of national mandatory singular-professional functional assessments conducted by any allied health professional that may not be suitably qualified removes the use of a multidisciplinary assessment of individual needs. This change is a direct violation of Article 26 of the CRPD.

The NDIA has justified several of their chosen assessments above others due to their use of self-reported measures as a way to reduce bias and apparent inferred malingering. The removal of the self-report measures however is not consistent over the choice of assessments

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chosen by the NDIA for those with mobility issues. The Lower Extremity Functional Scale7 is a self-report measure that does not rely on an objective measure of ability. This scale uses a 5-point Likert Scale where 0 is “Extreme Difficulty” and 4 is “No Difficulty” questioning your perceived level of difficulty performing a number of activities on the day of the assessment. The questions in this assessment are not robust, highlighting concerns with item- validity, especially item 1 (“Any of your usual work, housework, or school activities”) and item 2 (“Your usual hobbies, recreational or sporting activities”). If a person with a disability avoids activities or tasks because their mobility impedes their ability to engage in them, then it is not a “usual activity” and therefore their inability to participate in activities or tasks they are unable to would not be measured by this assessment. Therefore, there is potential for flooring effects as the scale does not account for people who avoid activities because of their impaired function. It is likely that people with impaired function would participate in activities in which they can participate in, not in activities they cannot participate in. If a participant with a mobility disability is assessed with this scale and only does a few usual activities without concern they would score very highly on this scale therefore skewing the results and masking a participant’s true level of impairment. This view is supported by Verheijde, White, Tompkins, Dahl, Hentz, Lebec & Cornwall (2013)8 who state that although the LEFS is a suitable scale it should be complemented by objective assessments of ambulatory function such as with the Berg Balance Scale, Six-Minute Walk Test, and Timed Up-and-Go Scale, as no single test can provide a complete picture when describing mobility impairments. So although it is recommended to not use this assessment on its own, the NDIA have elected to assess mobility with just this measure. This is not an objective, evidence- based holistic assessment of a participants functional impairment of mobility.

     I highlight these, as although I have Autism, a genetic disorder, a swallowing

disorder, and a musculoskeletal disorder that affects my mobility. Although the NDIA reject that my condition is relevant because of my primary disability, certain measurements are not validated to my conditions, and are vulnerable to flooring effects or other biases. Why is the NDIA only basing my assessment on my life stage and “primary disability” as opposed to the current golden standard evidence-based approach accounting for co-morbidities. Furthermore, the Agency is intent on obtaining personal information about me from another person. As an adult I do not consent to this invasion of privacy, or another person speaking on my behalf.

Scope of Practice

   Further to this the Agency states as part of the framework that any allied health

professional can conduct these assessments. This is highly alarming as APHRA forbids allied health professionals for providing services out of their scope of practice. Any professional who assesses a participant according to the framework, outside of their scope of practice could reasonably be liable for acting beyond their scope of practice and a complaint could be registered with their registration body.

  Given the peer-reviewed literature states that disability assessment should be assessed

using normative data, why has the NDIA opted for assessments that use standardised data? The ABAS-3 was considered for Independent assessments however it was rejected on the basis of self-reported measures. How will an independent assessor who spends at 1-3 hours9 with participants be able to comprehensively assess what their level of disability is. Most questionnaires for health or mental health use self-report measures. This includes the DASS- 21, K10, ABAS-3, SF-12 (which highly correlates with the WHODAS) yet because they are “not recorded by the assessor” they are excluded from use even though these are widely used throughout the world. Why does my lived experience of disability have less weight than an

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allied health professional asking me these questions who is restricted to a few hours. The ABAS-3 takes on average 3.5 hours to complete. Having already done an assessment conducted by an NDIA appointed Occupational Therapist, at the request of the NDIA while going through an Administrative Appeal tribunal (AAT) case I am dismayed by the reasons for excluding scientifically robust measures that meet the NDIS Act requirements and align with the ICF domains. The full functional assessment that I completed with this professional was directed to be completed in 2-3 hours; however due to the complexity of my disability the assessment process lasted for 8 hours. It was only because the occupational therapist who attended stated that it would be unethical for her to leave at the time specified by the NDIA, and that doing so would breach her professional conduct obligations and APHRA registration that she stayed. Even then the report contradicted other allied health professionals who I had been seeing for years and had assessed me over multiple occasions with multiple reliable and valid measures.

   Recent AAT rulings in Ray v NDIS10; and Arnel v NDIS11 found ‘independent

assessors’ that the agency engaged with were inaccurate in their assessments casting doubt on the reliability of such information. The Agency have stated this will not be the only source of evidence in the calculation of support yet the agency has admitted it will be used to calculate what support package will be provided. With my personal experience of this occurring outside of the Independent Assessment framework I have very serious concerns not only for the scheme but also for the health and wellbeing of participants. Under Freedom of Information request (FOI 20.21-0371) the agency has stated:

  “The documents considered as part of the internal review decision are referred to on
  page 26 of the decision letter, dated 3 December 2020. In finalising the decision, the
   reviewer did not state that they were ‘disregarding’ professional reports, but rather,
    in reaching a decision on the particular requested ‘statement of support’, based on a
   professional report had enough information to reach a determination, as the report
  was clear, sound and unambiguous. Therefore the reviewer did not need to review
   another allied health report and or journal to seek clarification.”

  “The internal review delegate did not ‘disregard’ peer reviewed journals as they had
  enough information to reach a decision, (a current practicing allied health
   professional’s report) without having to read a peer reviewed journal. It can be
   inferred that a peer reviewed journal would be taken into consideration by the allied
   health professional in completing their report and or conducting research and should
   not be cited above an allied health professional report.”

      It is critical to establish that in my particular circumstances I provided multiple,

clinically objective reports on my functional capacity from multiple psychologists, occupational therapists, speech pathologists, physiotherapists, a podiatrist and a dietitian yet they agency only read 7 out of 21. As a result in the last week I have been admitted to hospital 3 times, and a total of 4 times in the last month due to dysphagia-related complications. Once of these visits has been in the back of an ambulance, and two of these trips preceded occurrence of both aspiration-bronchitis and -pneumonia.

 As part of the reports I provided on my functional assessment I included professional

expertise and domains that are not measured as part of the “holistic” proposed independent assessment framework. This included comprehensive reports from a dietitian based on microbiome, blood panels and a food diary nutritional assessment; a physiotherapy assessment of muscular performance conducted with an ultrasound; a biomechanical assessment conducted by a podiatrist; clinical swallowing assessment conducted by multiple

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speech pathologists; sensory profile conducted by an occupational therapist; carer’s burnout assessment conducted by a clinical psychologist, and two full functional assessments conducted by two independent occupational therapists. Yet these will no longer provided any basis for what level of impairment I have, instead they will rely on brief, rudimentary assessments to calculate the level of supports I require. Furthermore, the Agency has only stated that the chosen assessments will be based on my primary disability, and not my other disabilities, which for me include mobility, cognitive and dysphagia. How will the agency and a support budget account for these other difficulties if the assessments they chose will not assess these domains? In my specific case because the Agency refused to accept the clinical reports I provided them from a large multi-disciplinary team my life has been endangered and I have been admitted to hospital on multiple occasions. If this is done on a large scale as is proposed under the Independent Assessment program what will be the implications? My case serves as an example of what can happen when the Agency bases functional capacity on less information and disregards my cumulative disability favouring just my apparent primary disability.

  As with the above quote the agency are willing to use the report of a singular professional to disregard all other forms of evidence, to a point that my life is now at risk due to complications from dysphagia-related aspiration. It is unethical for allied health professionals to provide biased information in reports; they must provide impartial advice based on assessments and dealings formed with the client. Minister Robert has stated12:

   "Independent assessment will provide an objective unbiased approach to understanding how well a person is able to function at home and in the community as well as the overall impact their disability has,"

Yet the NDIA has stated5 that the:

  "Assessment tools should be able to be administered by an allied health clinician regardless of discipline"

  Would any reasonable person go to a physiotherapist to talk about emotional issues or would you go to a Psychologist? Would you go to a Psychologist to learn how to walk, or would you go to a Physiotherapist? Would you go to an occupational therapist to learn how to increase your nutritional intake or would you see a dietitian? Would Medicare allow me to see any one of these other professions for psychological support? How is the NDIA providing a holistic assessment of function by forcing people with disability to be assessed by someone who is not adequately trained in a particular area to be able to make an informed objective assessment about someone's level of disability in an area that is outside of their scope of practice? It is unethical for Allied Health professionals to provide advice and recommendations for areas that are outside of their scope of practice. It is also grounds for unprofessional conduct complaints with APHRA. Why does the NDIA insist that this is an objective unbiased approach when it goes against the very standards of health care and professional conduct.

Prevention of Error and Adverse Effects

  The Australian Commission on Safety and Quality in Health Care13 is a Commonwealth entity tasked with contributing to better health outcomes and experiences for all patients and consumers, and improved value and sustainability in the health system by leading and coordinating national improvements in the safety and quality of health care. Within this overarching purpose the Commission aims to ensure people are kept safe when

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they receive health care and that they receive the health care they should. The Commission states that:

Patient safety and quality is often summarised as the right care, in the right place, at the right time and cost. The Commission defines patient safety as prevention of error and adverse effects associated with health care; and quality as ‘the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge’.

As it currently stands the proposed IA’s increase the risk of adverse effects due to assessing individuals with a non-comprehensive non-multi-disciplinary assessment of functional impairment, with no way of recourse should the assessment not accurately measure an individual’s impairment. Further Martin Hoffman NDIA CEO stated that between July 2016 and September 2019 1,279 NDIS-eligible participants died before receiving their first plan. Minister Roberts suggested that the deaths were attributable to a shortfall of funding when the participants were transitioning to the NDIS. However, what does the NDIA, DSS and Minister propose will happen when an individual’s functional impairment, that may have already been established using internationally evidence-based reliable and valid measures, suitable for the individual’s impairments/diagnosis, to be assessed with a less reliable measure of functional impairment and receive a plan generated from the rudimentary scores. As with my case, I have needed to seek medical care, and subsequently had paramedics called because of the serious nature of my impairment not being supported by the NDIS, regardless of the amount of evidence provided. I provided reports that recommended approximately 400 hours of therapy combined over a 12-month period that was created through a multi-disciplinary team of 12 allied-health professions, with my and my carers input and my understanding of what supports I required. Under the proposed framework my supports will be based on how I score on the independent assessment, and the personal biases or professional expertise of the professional conducting the assessment.

The DSS requires that assessments completed for the purpose of the Disability Support Pension be completed by a professional who is suitably qualified to perform an assessment depending on the disability14,15. Why does the DSS have a different standard for those on the NDIS compared to Centrelink? As such a Psychologist is required to perform a Psychological assessment, and a Physiotherapist a biomechanical assessment for Centrelink purposes. If it is unacceptable for the DSS to accept a physiotherapist conducting a functional impairment assessment on someone with a psychosocial disability for the Disability Support Pension, why is it acceptable for the NDIS?

Tune Review

Although the Tune Review16 did recommend the use of independent functional assessments it did so only for those who were applying to enter the scheme, and for those who required further evidence, not for everyone on the scheme, especially those who can provide all the necessary information. The Tune report did also state that if the Independent Assessment were to be implemented there are a number of key protections that need to be embedded as it rolls out, including:

“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 NDIA have publicly stated that you cannot appeal the assessment, which contradicts this key recommendation of the Tune report.

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“Given this, the depth of the NDIA-approved panel of assessors must be sufficient to mitigate any engagement risks for these cohorts as well as any other issues relevant in specific locations, communities, or for particular disability types.”

Yet assessments will be based on age, and only their primary disability not other factors, and are compulsory.

“Notwithstanding this, it may not always be possible to source an appropriate provider, or there may be particular individual circumstances where it is more appropriate for non-NDIA approved providers to undertake the assessments. In addition, functional capacity assessments would not always be required, for instance if a participant’s functional capacity is stable.”

In my current area of regional NSW we currently have a “critical shortage” of occupational therapists as defined by the Australian Governments Department of Education, Skills and Employment in the ANZSCO 2524-11 Occupational Therapists NSW17 report dated June 2019 which states: “There is a shortage of occupational therapists in metropolitan and regional NSW. Employers were generally not able to fill vacancies.” In my local region waitlists for local occupational therapists are over 36 months, or the Occupational Therapist’s books are closed. ANZSCO 2525-11 Physiotherapists NSW18 report states that there is a critical shortage of physiotherapists, with 23% of vacancies filled, as opposed to 53% of occupational therapists. The NDIA with their Independent Assessors will further increase this shortage, which is already strained.

The Tune review also stated, most importantly that Independent Assessments be discretionary, not mandatory:

“Therefore, it is reasonable that the NDIS Act is amended to enable the NDIA to require the provision of a functional capacity assessment by a NDIA-approved provider, but that this power be discretionary. To support this, the NDIA will need to develop clear operational guidelines for decision makers in exercising this discretion”

“Recommendation 7 The NDIS Act is amended to: (b). provide discretionary powers for the NDIA to require a prospective participant or participant undergo an assessment for the purposes of decision-making under the NDIS Act, using NDIA-approved providers and in a form set by the NDIA.”

Independent Assessments were recommended to be discretionary and only for those who could not source sufficient evidence. The NDIA have interpreted this, as to replace and override all existing evidence. How is reducing the level of evidence holistically assessing functional impairment in a comprehensive manner. The way the NDIA have envisaged the Independent assessments is to have the assessment take place at home, however this directly contradicts the assertion of Minister Robert as where our capacity to function in the community is assessed:

“Independent assessment will provide an objective unbiased approach to understanding how well a person is able to function at home and in the community as well as the overall impact their disability has,”

How can the Independent Assessor accurately and objectively assess us in the community if these assessments are to be conducted in our home? How can these assessments objectively assess our impairment if our voice is not respected (through self-reported measures) nor our functional ability holistically assessed through multiple comprehensive assessments?

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The principles of Choice and Control are central to the NDIS, yet I will have no choice or control. If I do not participate in the mandatory independent assessments what happen to my supports? If the assessment is capped at a few hours, as is stated in the tender documents9 how will my actual level of disability be recorded? From prior experiences with an independently selected assessor (outside of the Pilot) I required an appointment of 8 hours and then 3 hours of an assessment tool, not the 3 hours maximum nominated by the NDIA in their directive letter. How is this assessment less objective and less accurate than the proposed Independent Assessment program that is restricted to 3 hours, even though I didn’t know this clinician? How are the 19 reports I submitted from my team of 12 Allied health professionals (Dietitian, Occupational Therapists, Physiotherapists, Psychologists, Speech Therapists, and other therapists) biased? Doesn’t this level of multi-disciplinary input mitigate the any risk to the holistic assessment in establishing my functional disability? For the NDIA to prevent a participant from being able to use information from all of these professionals, how can the agency accurately gauge what supports participants require to determine what is reasonable and necessary, or whether they meet the criteria for NDIS entry.

There is also a question of whether having mandatory IA as opposed to discretionary IAs are in contravention of the Convention on the Rights of Persons with Disabilities (CRPD)6, which Australia is a signatory of. Especially Article 22, and Article 26 (a) in regard to preventing people with disability from self-reporting the impact of their disability through the exclusion of assessment tools that have self-report measures; and through the exclusion of supports based on a “multi-disciplinary assessment of individual needs and strengths”. The IA assessment process removes the multi-disciplinary assessment of individual needs that is required by Article 26 of the CRPD.

Health Literacy & Socio-economic Status

The DSS, NDIA and Minister Roberts have publicly stated that the intention of IAs is to increase the level of fairness across plans between those in lower and higher socio- economic groups, highlighting that participants in Northern Sydney receive on average $30,079 compared to $23,066 for the NSW average19; Inner East Melbourne topped Victoria with average plans of $27,516, compared to $19,209 for the average Victorian NDIS participants19; participants in the highest socio-economic area in Hobart receive 53% more than their lowest socio-economic counterparts20. Although the IAs attempt to provide fairness no assessment has been conducted on what affect social-economic status has on an individuals ability to navigate and understand the NDIS. The Australian Governments Institute of Health and Welfare released a report in 2016 titled “Australia’s Health 2016”21 explicitly stated that a persons education, income, and health were affected by their socio-economics status, with numerous studies linking socio-economic status to access to health and the presence of disability which are both mediated through educational outcomes, which is another predictor of higher socio-economic status.

However not until recently have scholars started to research Health Literacy, which is the understanding of what services people require or can access, and how their understanding impacts their functional ability to engage in a healthy lifestyle. Lastrucci, Lorini, Caini, Florence Health Literacy Group & Bonaccorsi, 201922 found that Health Literacy accounted for 18.5% of the association between self-reported health and education on average, with higher Health Literacy in lower socio-economic groups having a higher statistically significant effect. This suggests that the NDIA should be focusing on Health Literacy, and increasing the knowledge of what services can be provided to participants, or what reports are

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required by prospective participants. The Royal Australasian College of Physicians (RACP) Health and Disability Statement Position Statement 201723 highlighted the need for Health literacy amoungst support workers, carers and family members of those with Intellectual Disability, while recommending that health services should be working with providers to increase health literacy to support the individual NDIS participants support needs. This is a stark difference to my NDIS application process that resulted in a lengthy AAT process because the NDIA were reluctant to provide information as to what reports are required, while also cherry-picking statements out of context from professionals.

The Australian Bureau of Statistics 2071.0 Census of Population and Housing: Reflecting Australia (2018)24 shows that the areas that the NDIA have identified as receiving higher support packages are in areas that according to the Australian Statistical Geographic Standard (ASGS)25 and Socio-Economic Indexes for Areas (SEIFA)26,are classed as higher socio-economic areas. According to the aforementioned research the higher packages are indicative of higher health literacy, and therefore indicates they can access the appropriate services due their own level of health literacy or through support services. This leads to the question of what programs have the NDIA themselves undertaken to increase the level of Health Literacy in current NDIS participants, carers and family members, particularly in regard to those in lower socio-economic groups. Based the RACP, ABS, and the Australian Commission on Safety and Quality in Health Care, poor Health Literacy is prevalent in low socio-economic groups, especially in disadvantaged groups, such as those with disabilities. Based on this evidence it is likely that the disparity between high and low socio-economic groups receiving additional funding can be significantly explained through Health Literacy as opposed to just affordability. If it was just about affordability IAs would only be proposed for just NDIS Access, not for plan reviews. As there is a difference in packages between those of different socio-economic groups in subsequent plans then the NDIA should be making efforts to increase Health Literacy, and NDIS literacy to increase the ability for participants to receive the supports they require and the navigate the complex scheme.

The overarching purpose of the Australian Commission on Safety and Quality in Health Care is to ensure people are kept safe when they receive health care and that they receive the health care they should“13. This includes allied Health services which are covered under the NDS.

“The Commission defines patient safety as prevention of error and adverse effects associated with health care; and quality as ‘the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge’.”

How does a singular assessment that removes the multi-disciplinary approach to establishing the support needs of a participant ensure that NDIS participants receive quality professionally-based recommended supports without jeopardising participant safety. Furthermore, how is this consistent with current professional knowledge, especially noting the response from Occupational Therapy Australia Dated October 202027 that stated all stakeholders were misled by the NDIA about the purpose of the IA and they note:

“While we have been reassured that it is an eligibility screening process, the NDIA until recently used terminology pertaining to functional assessment, a practice that misled all stakeholders. Functional assessments as occupational therapists know them, require a distinct skill set that is core to occupational therapy practice. They cease to be a reliable or valid means of assessment if used by other professional groups in the diminished way currently proposed by the NDIA.”

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“If NDIS Independent Assessments are going to be more than eligibility tests, as it now appears they are intended to be – informing a successful applicant’s Plan and budget – they should take the form of genuine Functional Capacity Assessments and, as such, they should be conducted by fully qualified and AHPRA registered allied health professionals practicing strictly within scope of practice – in the vast majority of cases by an occupational therapist.”

Given that Dr Madden, and Professor Glazier28 have been quoted out of context in the NDIA and DSS joint submission, and the communication from Occupational Therapy Australia27 states that all stakeholders included in the framework development were misled. The committee must scrutinise when and in what context the other comments were made. Were these statements made prior to the IA announcement during the consultation period, or were they made after the announcement, and after the point in time when Occupational therapy has stated they were misled. It is critical to establish whether the NDIA and the DSS are cherry picking comments and reinforcing their assessment through confirmation bias. Given that previous reviews and assessments had been conducted through partnerships with other research organisations bound by the National Statement on Ethical Conduct in Human Research29 such as AutismCRC and Public University’s I need to question why this program was not conducted through an organisation that is bound by ethical code of conduct and would ensure that the results are evidence-based.

It is crucial to note that the Agency has not released any information or evidence that the assessments work. Given that no Independent assessments have been used to calculate a support package there is no evidence that it will provide the outcomes stated by the Agency and DSS.

According to Occupational Therapy Australia, the peak professional body for occupational therapy, the current proposal goes against professional knowledge, which is required in all health policies by the Australian Commission on Safety and Quality in Health Care, and is endorsed through the support of the establishment of the National Safety and Quality Primary Healthcare Standards13 (NSQPH Standards).

As from experience while writing this submission; with the decision maker basing her decision on fewer reports I have subsequently been admitted to hospital 3 times in the last 7 days, once in an ambulance, because the NDIS failed to read the evidence that outlined the supports I require, as recommended by a multi-disciplinary team of fully qualified APHRA registered professionals. I am a real-life example of an individual who has been adversely affected by a decision that disregarded professional knowledge. The NDIS provides primary health care services through the provision of nurses and allied health professionals and therefore should be held to the NSQPH standards. The agency have stated they will not assess my dysphagia or my mobility issues and only rely on my age and primary disability4; how is this a holistic assessment of those with similar circumstances? On the contrary I will be assessed against other participants who have autism but not dysphagia or a mobility disability. This is not similar circumstances and will endanger lives.

Across the reports provided, I provided evidence of supports that will not be measured by the proposed independent assessment that directly relate to functional ability to provide self-care, yet these rudimentary assessments are intended to provide a “holistic” assessment. Due to the rudimentary item responses in the selected assessment scales, the need for assistance can be understated or undetected. Such as Self-care in the WHODAS 2.030 the third item in this category is “I am now going to ask you about difficulties in taking care of yourself” for “Eating”. Difficulties include: “Increased effort, Discomfort or pain, Slowness,

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and Changes in the way you do the activity”. There are many people that have no difficulty physically eating, but have issues with having a full nutritious meal due to various disabilities impacting their ability to eat healthy meals, or their cognitive ability to prepare a meal. These assessments would report that the participant has no difficulty eating, but what about the quality of their diet? After my diagnosis of Dysphagia only then did I and some of my other allied health professionals become aware of “how long to eat” is defined as slowness. This begs the question of why those with Dysphagia will be assessed by physiotherapists or psychologists. These differences will not be detected in the proposed framework and the professionals will not have the individual expertise or scope to be able to render professional services. The Vineland-3 questions on eating are specifically relating to the physical act of eating, and not about the quality of food, or the ability to engage ones’ self in being able to prepare a meal, with the Craig Hospital Inventory of Environmental Factors31 not having any measures on diet or eating. Having a poor-quality diet can impact participants cognitive function32, and mobility33, however this will not be recorded in the current proposed framework. The same can be said of toileting. The WHODAS 2.0 has no measure on the difficulties participants may face with toileting.

Without measures to assess a person comprehensively the Agency cannot reasonably state that these are holistic assessments that will capture a participant’s functional capacity.

NDIA and Community Partners

As a PhD student in an allied health field, I understand the services I, and my son require both because of my experience with disability, and professional knowledge. Therefore I have a higher health literacy comparative to my socioeconomic status and being classified as a disadvantaged group (person with disability). If there is a large discrepancy between what those in different areas receiving unfair support packages, attention should be focused on the NDIA’s use of Local Area Coordinators (LACs), Early-Childhood-Early Intervention (ECEIs) partners, and Support Coordinators, which regardless of contractual obligations are not always in the best interest of the participant or their carer’s. Due to my qualifications, deep understanding of allied health and disability supports, and my ability to self-advocate I should be, under Choice and Control be allowed to choose not to have an LAC. I have been told by the NDIA that choice and control does not extend to the preparation of my plan with an LAC, as that is a management issue, not a plan preparation issue as identified in Section 4 of the NDIS Act34:

    4. "People with disability should be supported to exercise choice, including in relation to taking reasonable risks, in the pursuit of their goals and the planning and delivery of their supports.",

    8. "People with disability have the same right as other members of Australian society to be able to determine their own best interests, including the right to exercise choice and control, and to engage as equal partners in decisions that will affect their lives, to the full extent of their capacity.",

    9. "People with disability should be supported in all their dealings and communications with the Agency so that their capacity to exercise choice and control is maximised in a way that is appropriate to their circumstances and cultural needs.",

   10. "People with disability should have their privacy and dignity respected."

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   13. The role of advocacy in representing the interests of people with disability is to be acknowledged and respected, recognising that advocacy supports people with

disability by:

           (a) promoting their independence and social and economic participation; and,

           (b) promoting choice and control in the pursuit of their goals and the planning
        and delivery of their supports; and

            (c) maximising independent lifestyles of people with disability and their full
           inclusion in the mainstream community.

  The above clauses of Section 4 of the NDIS Act are the General Principles guiding

the Act. Yet as a NDIS participant the agency believe that I do not have the capacity to make an informed decision about what is choices I can make, about my life in the planning and delivery of supports. This can be seen in the proposed IA as it has been determined that I cannot answer self-reported questions on the basis I have a disability, and that I must have an LAC regardless of whether I do not need one; this is a direction violation of my Human Rights under the CRPD.

   In the NDIS Practice Guide – Understanding Therapy Supports35 the agency states that the ---only role of the LAC is to assist the NDIS participant to implement their plan. If this is the case what are the contractual obligations of community partners in increasing Health Literacy in participants and their families? If the agency are stating that it is the role of an LAC to assist participants in implementing their plan, this also includes supporting participants in obtaining the evidence to support higher needs based on similar functional impairment. However, from personal experience of my sons NDIS plan I was told that “you should be happy”, “Stop complaining, you have more than the average Autistic person in this area”. “We only fund your son for his Autism, you cannot get physiotherapy”. How can the LAC perform the role of supporting participants obtaining information if they do not understand what the definition of disability is, what supports are required for the specific individuals, or what supports and evidence can be sought under the NDIS Act. Since becoming an NDIS participant less than 12 months ago I have had 5 Local Area Co-ordinators. Each one has been woefully inadequate, and from experience I can see why those in lower socio-economic groups have lower packages. The NDIA have admitted there are differences according to socio-economic status19,20 yet they have not attempted to address this. Why? Once a person becomes an NDIS participant affordability should no longer be an issue in establishing what supports they require. However, as participants still have on average a significant difference between those in high and low socio-economic areas it its evident that the NDIS is too complex or that people are unaware what evidence is required once they become a participant.

      It is likely that the level of LAC/ECEI inexperience, and/or caseload is also a significant predictive indicator of support package amounts and assessed needs. What training or understanding of disability do LAC/ECEI co-ordinators have over parents, or participants living with disability who can advocate for themselves or their children? As a result of my health literacy, my sons plan according to the NDIS Simple Participant Data Tool36 receives 5 times what the ‘average’ is compared to our region based on those with “similar” circumstances. By similar circumstances I refer explicitly to only age and the recorded primary disability, as these are the only demographics the NDIS state in their datasets. It seems as though the NDIA and DSS rationale for blaming inequality through socio-economic status through postcode1, is not completely accurate. It would seem evident that the level of health literacy, and the degree of professional access within communities is

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also a significant contributing factor, as once someone is a participant their plans should not continue to be significantly different to their socio-economic counterparts.

Once a person becomes an NDIS participant affordability should no longer be an issue in establishing what supports they require in subsequent plans as funding is supposed to be made available for participants to gather evidence. However, a major concern is the lack of understanding from LAC’s and NDIA employees who will state that something is not funded when it actually is. Those in higher socio-economic areas will have access to support services that can correct misinformation or unclear advice37, unlike others in lower socio- economic areas who without these supports are not aware of receiving incorrect advice. Such as referring people to Medicare in declining psychological services under the NDIS for disability-related services, or offering a “topup” of a Mental Health Plan, which under the Appendices38 is not a service appropriately funded by the NDIS.

I highlight access to professional services as I live in regional NSW and struggle to find professionals with capacity to engage with. A national mandatory independent assessment program will significantly reduce the already depleted levels of professionals, especially for those in regional and rural Australia. How does the DSS and NDIA propose there will be sufficient professionals for both the IA program and for NDIS therapy needs, and public health demand? As stated above The Department of Education, Skills and Employment17,18 state there are shortages of Occupational Therapists, and Physiotherapists. Furthermore, the rates of shortages in regional Australia are higher than metropolitan areas. The proposed framework will have negative ramifications to more than just NDIS participants or prospective participants.

Although my reports were numerous and devised by a multi-disciplinary team to determine what I require that are reasonable and necessary, the person making a decision (planner) is not adequately qualified, nor are they required to be, to be able to comprehend these reports. Especially in my complex case where my professionals directly stated I required a senior planner with understanding in complex co-morbidities. Regardless of this advice, and allied health professionals being bound by scope of Practice requirements NDIA planners do not have to understand the information before them. If they don’t understand it, they are not required to contact the author of the report. I have been verbally told by a decision maker that:

“obviously because you are doing a PhD your disability doesn’t affect you”, when I questioned their rhetoric they replied

“I didn’t pass my undergraduate so your fine, you obviously don’t need help”.

Following this logic Stephan Hawking’s obviously didn’t have a disability. The actions of unsuitably qualified staff performing duties with biases and without care or diligence has quite literally endangered my life. How will this result for participants and their families when the information is of a lower quality while not factoring in the complete functional impairment4, and the staff making decisions do not have minimum qualifications requirements.

Another issue that raises alarm is a response I received through a Freedom of Information request about training and guidance given to planners and decision makers in identifying and avoiding confirmation bias. FOI 20/21-0469 stated:

“I have conducted searches of the NDIA’s documents management systems and made enquiries with NDIA staff. These enquires have revealed that the NDIA is not in

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   possession of documents matching the specific scope of your request. This is because
  no documents could be located which explicitly match the scope of your request,
  namely documents, training materials, notes, guides provided to NDIA staff how to
    identify, and avoid confirmation bias.”

      It seems likely that the inconsistency in plans can also be attributed to poorly trained

planners and decision makers who are unaware that they have engaged in biased decision making processes simply because they do not know how to critically analyse data without forming and supporting their initial biased impressions. It is disbelieving that the Digital Transformation Agency, The Australian Public Service Commission, the NSW State Government and the Queensland State Government have policies on how to identify and avoid confirmation bias yet the NDIA do not.

Other matters

  Another matter that is relevant is that the Agency in their submission1 raised concerns

about the flexibility of plans stating that Independent Assessments would increase this. However, as a Self-managed participant I know the agency is not required to make supports stated, so this argument is flawed as the agency already has the ability to increase flexibility of plans under the current legislation (NDIS Act s33(3)). The comments made by Minister Robert regarding the oversight of Self-managed participants due to fraud39 is deeply concerning and condescending. Although there is fraud, ANAO40, and AUSTRAC41 has stated that these cases are not participants but third party providers of supports. In the Agency’s submission they stated that flexibility in plans could be given under the changes to legislation, however the changes will remove choice and control, and the flexibility to seek supports. Not only through removal of individualised supports, but by removing the choice to tself-management. The Minister has stated that they will remove self-management and they will oversee all payments to reduce fraud. If this happens, I will lose my providers, as they will not deal with NDIA payments and will only see private clients who can pay on the day. Consequently, this will also increase the financial burden of the NDIS as I will not be able to access providers for less than the Price Guide42. This means that my sons’ current psychologist that costs the scheme $135 per hour will be increased to the price guide of $241.41, and our physiotherapist will increase to $193.99 per hour from $120. The Minister has stated that self-managed participants are defrauding the government by purchasing yachts and this is why it needs to be removed. Does the DSS and NDIA acknowledge that this will increase the cost of providing supports to participants, and cause participants to lose services. This will jeopardise the health and wellbeing of participants and significantly increase the cost of the Scheme. The agency currently has the ability to increase plan flexibility by removing stated supports and allowing participants to self-manage, however the Minister is doing the opposite without evidence and stating it cannot be currently done.

  The NDIS is required to perform its functions using actuarial analysis34. Where is the

actuarial evidence that an untested assessment will reduce costs and increase equality across socio-economic status? Where are the references in the joint DSS and NDIA Submission1? Given this detail is lacking there, is no evidence that independent assessments will work. Although the agency states that this is not a cost-cutting measure why was it relevant to state in their submission that the scheme was not expected to have as many participants as it does1. The Agency is inferring that without the proposed changes the Agency will not be acting for the financial sustainability of the NDIS. However, there are other measures that could be implemented immediately without legislative change that would increase the financial

sustainability of the NDIS.

One major example would be the removal of the requirement of a full assistive technology assessment for items that can be under $1500. I have been told that as an adult I am required to get a full AT assessment for a blanket, “because it may harm you”; the assessment would be required to be 15 pages long and would cost $193.99 per hour to write. It is utterly ridiculous that this is required for something common sense would not harm an adult. How can the Agency justify this requirement and waste of taxpayer dollars on an unneeded assessment, but not what Occupational Therapy has stated as required for independent assessments:

 “An [Independent Assessment] should take the form of genuine Functional Capacity Assessments and, as such, they should be conducted by fully qualified and AHPRA registered allied health professionals practicing strictly within scope of practice – in the vast majority of cases by an occupational therapist.”

  Another Issue that raises the cost of the scheme is the incorrect application of Subdivision 38-38 of the GST Act43. I have been told by the NDIS that items such as automation devices do not meet the GST-free exemption as a reasonable and necessary support, even though they are listed in the GST-free Supply (National Disability Insurance Scheme Supports) Determination 201744,45 under schedule 1.3. I have been able to purchase reasonable and necessary supports GST-free when the retailer has contacted the ATO for advice, but each time a retailer has contacted the NDIS they have been told the item I was purchasing is not a reasonable and necessary support, even when that business is an NDIS register provider for that specific item. They cannot both be a registered provider of disability supports and not sell reasonable and necessary supports; this is a paradox. I highlight the GST-free supply as there are approximately 430,000 participants, with an average assistive technology budget of $10,000 according to NDIA data36. If the NDIA are giving incorrect advice about what is a reasonable and necessary support there is a potential loss of $430,000,000 per year in the Scheme just for assistive technology. Furthermore with $30,000 on average for core supports36 which also attract GST-free supply there is potential for this to increase further. Most mainstream businesses I contact requesting to purchase with the exemption will tell me that I can either claim it back from the ATO, or state that it is not a reasonable and necessary support; stating this is what they have been advised from the NDIS.

This is incorrect and jeopardising the financial sustainability of the NDIS.

Non-compliance of Internal Policies and Procedures

  Although the current system is far from perfect, there is poor internal compliance with policies and procedures. The Agency has not addressed this issue, with the Commonwealth Ombudsman stated in their submission37 that consistency in internal staff procedures was an area of concern. The NDIA’s proposed Independent Assessments framework further increases the inequalities and removes the assessment of individual needs. The current lapse in compliance measures ensures a systemic cultural paradigm where the agency are above reproach. This assertion was recently supported by the Australian National Audits Office who published ‘Decision-making Controls for Participants Plans’46 where the ANAO found "The NDIA's planning has not complied with established policies and processes. The NDIA's quality assurance audits have shown low levels of compliance with internal policy. The NDIA's Customer Relationship Management system does not fully support recording of participant planning considerations and approvals, or require all mandatory planning requirements to be completed." Furthermore the APS Act 199947 requires that employees act

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with care and diligence. Where is the care and diligence in the proposed framework? Even if the Agency implemented consistent staff procedures, the Agency’s own auditing process and ANAO reporting has shown there is high level of non-compliance. How useful will independent assessments be if staff do not currently comply with internal policies, procedures and legislative requirements46.

   Stakeholders who were consulted have stated they were mislead, and have been

misquoted. No evidence has been provided that Independent Assessments will work yet the Agency are moving ahead. These actions are not in line with the APS Code of Conduct47 where employees need to act with care and diligence, and with honesty and integrity. The implementation of the current proposed Independent assessments breaches the APS Acts Code of Conduct, the National Statement on Ethical Conduct in Human Research29, the National Safety and Quality Primary Healthcare Standards13, Scope of Practice requirements with the Australian Health Practitioner Regulation Agency, and ignores the Tune16 review recommendations.

 How can the NDIA state that the issues with plan packages are solely based on the

ability to collect evidence when the agencies own compliance auditing, and the ANAO report has shown poor compliance with internal policies and procedures. Given the statements made under Freedom of Information there should be caution accepting the rationale provided by the Agency and the DSS for the need for Independent Assessments. The issues with the differences in plan packages is not adequately explained by just postcode or income, as it would just affect those seeking access to the scheme. As with my personal circumstances using minimal evidence to calculate a support package has significantly endangered my life and will occur to others if a comprehensive assessment is not conducted or used to inform the required supports. The agency has shown, through the statement made to me that they are willing to “not need to review another allied health report and or journal to seek clarification.”. If the proposed Independent Assessment framework proceeds in its current form the government through the NDIA may be liable for civil and corporate criminal responsibility for negligence due to endangerment of participants health and wellbeing.

Recommendations:

Immediately halt the roll out of the Independent assessments and Pilot program, until a proper consultation has been conducted with those with disabilities so a co-designed assessment framework can be developed that is appropriate and based on disability and adheres to APHRA Scope of Practice requirements.
An Independent Assessment pilot should only be conducted through an organisation that that is bound by the National Statement on Ethical Conduct in Human Research, to ensure that any changes are evidence-based and that high risk and vulnerable groups are protected.
Forbid the use of the proposed rudimentary Independent Assessments in calculating supports when a comprehensive assessment from at least one fully qualified and APHRA registered professional has already been provided.
Enforce additional protections for participants, requiring staff to read and consider all evidence provided from qualified and APHRA registered professionals to ensure participants health and wellbeing.
Increase transparency by releasing all evidence, including quotes in-full from Dr Madden and Professor Glazier and any other professional or professional body quoted out-of-context relating to the pilot or framework development during the consultation period.
Release information as to what characteristics or demographic variables constitute “similar circumstances” in the calculation of support needs.
The Agency needs to endorse the recommendations in the Tune review verbatim, by only providing Independent assessments as a discretionary means for those who cannot source the required evidence; and allowing for participants and prospective participants to appeal the assessment in full.
Provide short-term plans for all new NDIS participants, with adequate funding for further comprehensive assessments conducted by fully qualified and AHPRA registered allied health professionals practicing strictly within scope of practice - to establish needs for participants subsequent plans at the earliest possible stage regardless of socio-economic status and location.
Provide Health Literacy training for all NDIS staff, participants and prospective participants, their families, support workers and providers to increase equality across socio-economic status and other demographic variables.
Enforce compliance of internal policies, procedures and legislative requirements to all staff.
Remove any notation or requirement for providing a primary and secondary disability; it should just be evidence of disability as defined in Mulligan v NDIS,
Implement specific training modules to ensure financial sustainability of the through: appropriate training of staff: in acknowledging GST-free supply criteria, and public awareness of s38-38 of the GST Act in the public domain; and removal of unnecessary assistive technology risk assessments where the items cost less than the assessment or where the item is reasonably unlikely to harm participants.
Adequate training be provided to all staff in identifying and avoiding biases in planning, policy development, research, and in any other role for the Agency.

References

Joint Submission to the Joint Standing Committee on the National Disability Insurance Scheme’s Inquiry into Independent Assessments (March 2021). The Department of Social Services & the National Disability Insurance Agency.
Milne, S., Campbell, L., & Cottier, C. (2019) Accurate assessment of functional abilities in pre‐schoolers for diagnostic and funding purposes: A comparison of the Vineland‐3 and the PEDI-CAT. Australian Occupational therapy Journal, 67(5).
Hessl, D., Nguyen, D., Green, C., Chavez, A., Tassone, F., Hagerman, R., Senturk, D., Schneider, A., Lightbody, A, Reiss, A., & Hall, S. (2009). A solution to limitations of cognitive testing in children with intellectual disabilities: The case of fragile X syndrome. Journal of Neurodevelopmental Disorders 1(1).
Independent Assessment Pilot: What is an Independent Assessment? National Disability Insurance Agency. Retrieved from: https://www.ndis.gov.au/participants/independent-assessments/independent-assessment-pilot
Independent Assessments: Pilot Learnings and ongoing evaluation plan. (September 2020). National Disability Insurance Agency.
Convention on the Rights of Persons with Disabilities and Optional Protocol. United Nations.
Binkley, J., Stratford, P., Lott, S., & Riddle, D. (1999): The Lower Extremity Functional Scale (LEFS): Scale development, measurement properties, and clinical application.Physical Therapy. 79:371-383.
Verheijde, J., White, F., Tompkins, J., Dahl, P., Hentz, J., Lebec, M., & Cornwall, M. (2013). Reliability, Validity, and Sensitivity to Change of the Lower Extremity Functional Scale in Individuals Affected by Stroke. The American Academy of Physical Medicine and Rehabilitation, 5:1019-1025.
NDIA Independent Assessment Panel – Attachment 1 – Statement of Work. Request for Tender. Reference Number 1000724626. National Disability Insurance Agency.
Ray and National Disability Insurance Agency [2020] AATA 3452 (8 September 2020). Administrative Appeals Tribunal of Australia. Retrieved from: https://austlii.edu.au/cgi-bin/viewdoc/au/cases/cth/AATA//2020/3452.html
Arnel v National Disability Insurance Agency [2019] AATA 4778 (18 November 2019). Administrative Appeals Tribunal of Australia. Retrieved from: https://www.austlii.edu.au/cgi-bin/viewdoc/au/cases/cth/AATA/2019/4778.html
National Disability Insurance Agency Media Release (2615). Minister Stuart Robert – An update from Minister Stuart Robert transcript. Retrieved from: https://www.ndis.gov.au/media/2615/download
Australian Commission on Safety and Quality in Health Care. Retrieved from: https://www.safetyandquality.gov.au/about-us
Australian Government Guide Social Security Law 1.278 – Released 8 February 2021. Section 3.6.2.10 Medical & other evidence for DSP. Australian Government. Retrieved from: https://guides.dss.gov.au/guide-social-security-law/3/6/2/10
Australian Government Medical Evidence requirements. Australian Government Services Australia. Retrieved from: https://www.servicesaustralia.gov.au/individuals/services/centrelink/disability-support-pension/how-we-assess-your-claim/medical-evidence
Tune, D. (2019). Review of the National Disability Insurance Scheme Act 2013: Removing red tape and implementing the NDIS Participant Service Guarantee.
Australian Government Department of Education, Skills and Employment. Occupational Therapist ANZSCO 2524-11 – NSW. Retrieved from:

https://www.dese.gov.au/skill-shortages/resources/anzsco-2524-11-occupational- thetherapist-nsw 18. Australian Government Department of Education, Skills and Employment. Physiotherapist ANZSCO 2525-11 – NSW. Retrieved from: https://www.dese.gov.au/skill-shortages/resources/anzsco-2525-11-physiotherapist- nsw 19. Government appoints independent assessors to make the NDIS ‘fair and consistent’. Sydney Morning Herald. Published 13 September 2020. 20. Ministers for the Department of Social Services Media Release. New data shows how a simpler, faster, fairer and more flexible NDIS will benefit all of Tasmania. (11 March 2021). Retrieved from: https://ministers.dss.gov.au/media-releases/6816 21. Australia’s Health 2016. Australian Institute of Health and Welfare. Retrieved from: https://www.aihw.gov.au/getmedia/9844cefb-7745-4dd8-9ee2-f4d1c3d6a727/19787- AH16.pdf.aspx 22. Lastrucci, V., Lorini, C., Caini, S., Florence Health Literacy Group & Bonaccorsi,G. (2019). Health literacy as a mediator of the relationship between socioeconomic status and health: A cross-sectional study in a population-based sample in Florence. PLoS ONE, 14(12). 23. Health and Disability Statement Position Statement. (2017). The Royal Australasian College of Physicians. Retrieved from: https://www.racp.edu.au/docs/default- source/advocacy-library/health-and-the-national-disability-insurance-scheme- position-statement.pdf 24. Australian Bureau of Statistics. (2018). 2071.0 - Census of Population and Housing: Reflecting Australia. 25. Australian Bureau of Statistics (2016). 1270.0.55.005 - Australian Statistical Geography Standard (ASGS): Volume 1 - Main Structure and Greater Capital City Statistical Areas. Retrieved from: https://www.abs.gov.au/ausstats/abs@.nsf/mf/1270.0.55.001 26. Australian Bureau of Statistics (2018). 2033.0.55.001 - Census of Population and Housing: Socio-Economic Indexes for Areas (SEIFA), Australia, 2016. Retrieved from: https://www.abs.gov.au/ausstats/abs@.nsf/Lookup/by%20Subject/2033.0.55.001~201 6~~Main%20Features~~SEIFA%20Basics~5 27. Australian Parliament Joint Standing Committee on the National Disability Insurance Scheme: Inquiry into general issues around the implementation and performance of the NDIS. Occupational Therapy Australia submission (October 2020). Occupational therapy Australia Limited. Retrieved from: https://otaus.com.au/publicassets/9c235f46-be1f-eb11-9435- 005056be13b5/OTA%20Submission%20to%20the%20Joint%20Standing%20Commi ttee%20on%20the%20NDIS%20Inquiry%20into%20General%20Issues%20around% 20the%20Implementation%20and%20Performance%20of%20the%20NDIS.pdf 28. NDIA Releases new Functional Capacity Framework. Mirage News. Published September 7 2020. Retrieved from: https://www.miragenews.com/ndia-releases-new- functioal-capacity-framework/ 29. National Statement on Ethical Conduct in Human Research (2018). Australian Government - National Health and Medical Research Council, Australian Research Council and Universities Australia. 30. Measuring Health and Disability: Manual for WHO Disability Assessment Schedule (WHODAS 2.0). World Health Organisation. Retrieved from: https://apps.who.int/iris/bitstream/handle/10665/43974/9789241547598_eng.pdf

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Craig Hospital Inventory of Environmental Factors (CHIEF). (2001). Craig Hospital. Retrieved from: https://craighospital.org/uploads/CraigHospital.ChiefManual.pdf
Kim, J., & Kang, S. (2017). Relationships between Dietary Intake and Cognitive Function in Healthy Korean Children and Adolescents. Journal of Lifestyle Medicine, 7(1).
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National Disability Insurance Scheme Act 2013.
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National Disability Insurance Scheme Explore Data. National Disability Insurance Agency. Retrieved from: https://data.ndis.gov.au/explore-data
Commonwealth Ombudsman submission into the Joint Standing Committee on the National Disability Insurance Scheme: Inquiry into Independent Assessments. (Submission 4).
Planning Operational Guideline Appendix 1 - Table of guidance on whether a support is most appropriately funded by the NDIS. National Disability Insurance Agency. Retrieved from: https://www.ndis.gov.au/about-us/operational-guidelines/planning- operational-guideline/planning-operational-guideline-appendix-1-table-guidance- whether-support-most-appropriately-funded-ndis
Ministers for the Department of Social Services Media Release. Interview with Leon Byner, 5AA Mornings. (1 March 2021). Retrieved from: https://ministers.dss.gov.au/transcripts/6771
Interim Report on the Key Financial Controls of Major Entities. The Auditor-General. Auditor-General Report no.38 2019-20. Financial Statements Audit. Retrieved from: https://www.anao.gov.au/sites/default/files/Auditor-General-Report 2019- 2020_38a_0.pdf
NDIS funds spent on crypto, gambling, luxury goods, warns AUSTRAC. Australian Financial Review. Published December 8, 2020. Retrieved from: https://www.afr.com/companies/financial-services/ndis-funds-spent-on-crypto- gambling-luxury-goods-warns-austrac-20201208-p56ll7
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(Goods and Services Tax) Act 1999.
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Public Service Act 1999. Retrieved from: https://www.legislation.gov.au/Details/C2019C00057