NDIA Accountability Project

NSW Government Submission regarding independent assessments and reasonable supports

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Independent Assessments Submission 275

Mark Speakman Attorney General Minister for the Prevention of Domestic Violence Minister for Families, Communities and Disability Services

The Hon Kevin Andrews MP Committee Secretary Joint Standing Committee on the NDIS PO Box 6100 Parliament House Canberra ACT 2600

Dear Mr Andrews

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

Thank you for your correspondence dated 16 December 2020 regarding the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) inquiry into Independent Assessments.

Please find attached the NSW whole-of-government submission to the inquiry.

The NSW Government supports in principle the introduction of independent assessments funded by the National Disability Insurance Agency (NDIA) to address inequities that currently exist for participants and prospective participants.

The NSW Government also has a number of significant concerns about the proposed approach to assessments and other proposed changes to the NDIS legislation which have been consistently raised by government and disability sector stakeholders in NSW and yet to be adequately addressed.

I am hopeful the inquiry may have some influence on shifting the approach and addressing outstanding issues.

Yours sincerely

Mark Speakman

26 May 2021

Independent Assessments Submission 275

NSW Government submission The Joint Standing Committee on the National Disability Insurance Scheme Inquiry into Independent Assessments

NSW Government Submission

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

May 2021

NSW GOVERNMENT

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Independent Assessments Submission 275

NSW Government submission The Joint Standing Committee on the National Disability Insurance Scheme Inquiry into Independent Assessments

Introduction

The NSW Government welcomes the opportunity to provide a submission to the Joint Standing Committee on the National Disability Insurance Scheme - inquiry into Independent Assessments.

The NSW Government position

  1. The NSW Government supports in principle the introduction of independent assessments funded by the National Disability Insurance Agency (NDIA) to address inequities that currently exist for participants and prospective participants in relation to a person’s ability to gather and pay for evidence, and to improve consistency in access and planning decisions. The NSW Government has serious concerns about independent assessments as currently proposed.

  2. The NSW Government considers that further genuine involvement of people with disability, clinicians, disability advocates, peak groups, and state and territory governments is required to ensure the assessment model is fit for purpose and its implementation achieves positive outcomes. Feedback from stakeholders is that consultation to date has involved information provision without adequately addressing the concerns raised by those stakeholders.

  3. The NSW Government makes specific representation on ameliorating risks and implementing protections outlined in the 2019 Review of the NDIS Act 20131 undertaken by Mr David Tune AO PSM (the Tune Review) including:

    • Addressing circumstances for cohorts of people with disability who may be less likely to engage with the NDIA-approved assessors, particularly people from Aboriginal and Torres Strait Islander or Culturally and Linguistically Diverse (CALD) backgrounds and people with psychosocial disability.
    • Ensuring the depth of the NDIA-approved panel of assessors is 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.
    • The NDIA should not implement a closed or deliberatively limited panel of providers to undertake assessments, engagement issues should be monitored closely and the panel of approved providers should be dynamic and evolve. Where structural or localised engagement risks are identified, the NDIA should actively engage with participants and the market to ensure the availability of appropriate providers.
    • There may be particular individual circumstances where it is appropriate for non-NDIA approved providers to undertake the assessments or where assessments would not be required.
    • Key protections should be embedded as the approach rolls out, including: a. participants having the right to choose which NDIA-approved provider in their area undertakes the independent assessment b. participants having the right to challenge the results of the independent 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 c. the NDIA-approved providers being subject to uniform accreditation requirements that are designed and implemented jointly by the NDIA and appropriate disability representative organisations d. the NDIA providing clear and accessible publicly available information, including on the NDIS website, on the independent assessments being used by the NDIA and the available panel of providers.

  4. The NSW Government cautions against the application of a rigid methodology linking the quantum of an individual’s funding package to the results of an independent assessment. Flexibility needs to be built into the proposed model to allow for the deeply varying needs and circumstances of people with disability. The determination of funded supports should be directly informed by the expressed goals of the participant and evidence provided by treating professionals, support workers, families and carers.

1 Review of the National Disability Insurance Scheme Act 2013, David Tune AO PSM, December 2019 (P. 66 - 67).

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Independent Assessments Submission 275

NSW Government submission The Joint Standing Committee on the National Disability Insurance Scheme Inquiry into Independent Assessments

  1. The NSW Government strongly advises the Australian Government to undertake and share more detailed workforce planning prior to full scale roll out of the independent assessment process. The capacity and capability of the allied health workforce to provide quality independent assessments and other support services (for example direct service delivery in mainstream health, disability and aged care), particularly in thin markets, requires further consideration.

  2. The NSW Government opposes any changes to the NDIS Act that diminishes the role of state and territory governments in defining and clarifying what constitutes reasonable and necessary supports. The Tune Review recommended that all governments and the NDIA should provide more clarity around the definition of ‘reasonable and necessary’ supports that should be funded under the NDIS (Recommendation 4; December 2019)2. In its response the Tune Review, the Australian Government supported Recommendation 4 and agreed to work with states and territories to implement amendments to the NDIS Act and Rules3. Consistent with that commitment, the NSW Government requests the Australian Government undertake a consultative approach involving all jurisdictions, NDIS participants and the wider sector to provide greater clarity on reasonable and necessary supports under the NDIS. A truly collaborative approach will ensure the NDIS is effective and sustainable for all Australians.

  3. Each of the terms of reference for the inquiry are addressed below to support the NSW Government position outlined above and provide further suggestions. In particular, the NSW Government supports:

    a. an openness to allowing assessments to be conducted by treating professionals or organisations with expertise in relation to people with particular disability, where appropriate b. comprehensive ongoing training of assessors and NDIA delegates to develop an applied understanding of different cohorts of people with disability c. a strong quality assurance framework that includes independent auditing and monitoring of the impact on access to the Scheme, quantum of funding for reasonable and necessary supports, and the outcome of internal reviews and appeals against decisions based on the results of independent assessments d. safeguards to assist participants transition to new arrangements if they are forced to exit the scheme or have their plan funding significantly reduced after an independent assessment e. a flexible approach to the exceptions regime, focussed on ensuring that people who should be exempt are not subject to additional stress and the case for exception is judged on merit f. continuing independent evaluation of the outcomes of the independent assessment process that includes an analysis of access data and plan funding, the experience of participants and prospective participants, and the outcomes for participants.

2 Review of the National Disability Insurance Scheme Act 2013, David Tune AO PSM, December 2019 (P. 49). 3 Australian Government response to the 2019 Review of the National Disability Insurance Scheme Act 2013 report, August 2020 (P. 5).

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Independent Assessments Submission 275

NSW Government submission The Joint Standing Committee on the National Disability Insurance Scheme Inquiry into Independent Assessments

Terms of Reference

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

Development and modelling

The NSW Government has concerns about how the proposal for compulsory independent assessments was developed. It is understood that the NDIA primarily designed the proposed assessment model in consultation with a small number of academics 4. The NDIA subsequently hosted information sessions with state and territory government agencies and sector representatives. Feedback from NSW stakeholders indicates that genuine consultation and co-design with people with disability and other relevant stakeholders has been lacking.

As reported in the media5, the independent assessment pilots were limited in reach and evaluation, with the first pilot involving 510 participants limited to people with intellectual disability, autism spectrum disorder or psychosocial disability. The main source of participant feedback was a survey completed by 145 people, only 35 of whom had a disability. The second pilot was disrupted by the COVID-19 pandemic. Neither pilot was subject to independent evaluation.

The NSW Government encourages the Australian Government to facilitate genuine involvement of people with disability, families and carers, clinicians, disability advocates, peak groups, and state and territory governments in the final design and ongoing evaluation of the independent assessment model to address the risks and issues that are identified.

Justifications

One of the key justificatons for introduction of the independent assessments is equity; equity in access to evidence and equity (consistency) in planning outcome. The NSW Government supports the introduction of independent assessments funded by the NDIA to address inequities that exist for participants and prospective participants in relation to a person’s ability to gather and pay for evidence. However, NDIA guidance on independent assessments and access states:

“A person who applies for the NDIS will provide information on their age, residency and evidence of their disability, including if their impairment is, or is likely to be, permanent. If these criteria are met, we will then request an independent assessment. An independent assessment will not be requested if age, residency, disability and permanency criteria are not met. In some circumstances other information may be needed to determine if a person is eligible for the NDIS.6”

Therefore, under the NDIA proposal, people with disability will still be required to prove that they have a disability and will still need to obtain evidence from their existing clinicians at their own expense to prove their disability is permanent.

In relation to equity (consistency) in planning outcome, the NSW Government supports the introduction of independent assessments to improve consistency in planning decisions by NDIA delegates. However, it is not clear how compulsory independent assessments alone will achieve this outcome without other reforms. The NDIA should undertake root cause analysis of the inconsistency and consider:

  • improving transparency in delegate decision making
  • publishing all policy and guidance material used by the NDIA in decision making
  • improving training and skill development of NDIA delegates
  • acknowledging as a guiding precedent the determinations of the Administrative Appeals Tribunal.

4 www.ndis.gov.au/news/5260-ndia-releases-new-functional-capacity-framework. 5 www.smh.com.au/politics/federal/just-not-ok-only-6-per-cent-of-ndis-trial-participants-completed-survey-20201221-p56pbc.html. 6 NDIS Consultation paper: Access and Eligibility Policy with independent assessments, November 2020 (P.8).

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Independent Assessments Submission 275

NSW Government submission The Joint Standing Committee on the National Disability Insurance Scheme Inquiry into Independent Assessments

Other reasons

The NSW Government recognises pressures on scheme sustainability, however, caution should be exercised in attempting to address sustainability risk primarily through control of costs by constraining access and plan funding. Scheme sustainability should be addressed through insurance principles, including investment in preventative interventions. For example, Tier 1 and 2 supports envisaged by the Productivity Commission and agreed by governments under the Information, Linkages and Capacity Building (ILC) Policy Framework (including Local Area Coordination) have largely been neglected to date and yet are critical to the sustainability of the Scheme.

Further, it must be recognised that the long term benefits of the Scheme are realised by building the capacity of informal, community and mainstream supports for all people with disability and maximising the independence, capacity and functioning of individual participants by investing in appropriate supports that maximise achievement of goals and outcomes, subsequently lowering costs over time.

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

Prior to the introduction of the NDIS, the NSW Government contracted an independent assessment service to conduct support needs assessments of all residents of state operated group homes as the basis for building a budget for this stream of the business. The process was effective at shaping the overall budget envelope for approximately 350 group homes providing supported accommodation to over 1,200 people with disability with varying support needs. However, the process was not effective at predicting costs at an individual service unit level, let alone an individual client level. Some individuals or groups of individuals would end up costing more than the benchmark established through the assessment process, in other cases less. Reassessment of individuals was common and, most importantly, budget adjustments were made at the service unit level to meet the needs of individual clients.

The NSW Government appreciates the contribution that standardised functional capacity assessments could make in developing a package of supports for an individual but stresses the importance of considering all relevant information available to determine the funding package, as is currently required by the NDIS Act. A clear distinction needs to be made between functional capacity and an individual’s support needs that may require funding through the NDIS. The assessment model should remain open to reassessment, challenge and the inevitable adjustments that will be required, especially for individuals with high and complex support needs.

c. the human and financial resources needed to effectively implement independent assessments

The NDIA is proposing to conduct independent assessments at significant scale. The Request for Tender documents indicate the NDIA expects to conduct 520,000 assessments over 3 years, and that the average time for an assessment will be 2.5 to 3 hours (including observation, conducting the assessment and completing the report)7. It is unlikely that quality person-centric assessments will be able to done on this scale in these timeframes. Many cohorts of people with disability, such as those with intellectual disability, psychosocial disability, cognitive impairment, those who experience language/communication barriers and those who have difficulty engaging with government service providers will:

  • require additional effort and time to foster engagement
  • require supplementary discussions by the decision maker with their support networks and informal supports
  • have limitations on their assessment endurance.

7 Request for Tender - NDIA Independent Assessment Panel – Attachment 1 – Statement of Work (P.5 & P.20).

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Independent Assessments Submission 275

NSW Government submission The Joint Standing Committee on the National Disability Insurance Scheme Inquiry into Independent Assessments

Access to a suitably qualified and skilled workforce to undertake assessments on this scale is also problematic, especially in rural and remote locations where there is already a thin market for allied health practitioners. This will be compounded by the proposed approach to avoiding conflicts of interest whereby a clinician undertaking an assessment will then be unable to provide therapeutic and other services to the participant, and vice versa. There may also be a flow on impact on state and territory health agencies in attracting and retaining sufficient allied health staff to deliver acute care services.

The proposal to broadly apply the assessment process to the majority of prospective participants and participants over time also risks duplicating the effort of mainstream services. People with disability will usually have existing assessments undertaken by health professionals that are used for a variety of purposes including in applications for access or for planning purposes with the NDIA.

The Tune Review considers that:

“In at least the short term, the NDIA should not implement a closed or deliberatively limited panel of providers to undertake functional capacity assessments. Rather, engagement issues need to be monitored closely and the panel of approved providers should be dynamic and evolve to ensure the new approach does not drive disengagement. Where structural or localised engagement risks are identified, the NDIA should actively engage with participants and the market to ensure the availability of appropriate providers”8.

The NSW Government encourages the Australian Government to undertake further workforce planning required to conduct independent assessments on this scale that maintains quality in the assessment process and addresses the issue of thin markets. Rules and guidance around the assessment process must include adequate flexibility to ensure the allied health workforce has capacity to provide assessments and other support services.

The NSW Government would also welcome the publication of a cost-benefit analysis by the NDIA to clarify the cost of the proposal to introduce compulsory independent assessments and the benefits that can be expected. As co-funders of the Scheme, states and territories have an important role to ensure the residents of their jurisdiction realise the benefits expected from the NDIS, and that decisions that will materially impact those benefits are carefully considered before they are carried out.

d. the independence, qualifications, training, expertise and quality assurance of assessors

Independence v quality

The proposed assessment model relies on assessments being administered by an independent assessor in order to minimise the risk of bias and to improve professional objectivity. The quality of assessments in the proposed model relies heavily on the reliability and validity of the assessment tools, and the practicality of implementation. The Independent Assessment Framework notes “assessment tools that require highly specialised qualifications (such as psychologist or medical specialist qualifications) will not be practical on a national scale.”9

However, many stakeholders have raised concerns that an assessment conducted by a generalist assessor who sees the person only for assessment, especially if relatively short, may not be as accurate as an assessment conducted by health professionals who know the person or their disability type well (see inset box for examples).

8 Review of the National Disability Insurance Scheme Act 2013, David Tune AO PSM, December 2019 (P.67). 9 Independent Assessment Framework, August 2020 (P.28).

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Independent Assessments Submission 275

NSW Government submission The Joint Standing Committee on the National Disability Insurance Scheme Inquiry into Independent Assessments

In the proposed assessment model, specialist disability types will be assessed outside the professional expertise that has been developed to address the needs of a particular cohort over many years. In the two examples below (there are others), the expert assessment of support needs of the individual can not be replaced with a generalised assessment tool applied by an independent assessor.

Cerebral Palsy Alliance

In NSW the Cerebral Palsy Alliance has over the past 70 years developed a centre of excellence for the assessment and support of people with cerebral palsy. The therapists are experts in their field and conduct research, lecture health professionals and provide hands-on services to address the complex diversity that is cerebral palsy. The early effective assessment and treatment of an individual with cerebral palsy greatly impacts their outcomes and future independence.

Royal Rehab

Royal Rehab has been providing specialist accommodation and support services for people with disabilities for over 120 years. They are highly regarded for specialist expertise in brain and spinal cord injury rehabilitation. Their multidisciplinary team of healthcare professionals support people to achieve as much independence and quality of life as possible. This includes assisting people to adjust to changed abilities, relearn skills and gain new ones, and reintegrate into their homes and the community.

The Tune Review notes:

“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.”10

The NSW Government cautions against excluding assessments being undertaken by treating professionals and experts. Any amendment to legislation or rules should ensure flexibility with regard to who can undertake an assessment of functional capacity or support needs.

Training and accreditation

The Request for Tender documents note training will cover functional capacity assessment tools, administrative processes and providing assessment services to different cultural groups, including Aboriginal and Torres Strait Islander people11.

The NSW Government stresses the importance of ongoing assessor training and professional development activities to develop and maintain competence in implementing assessment tools in context. This will necessitate an understanding of specific needs of different cohorts of people with disability including:

  • people with psychosocial disability
  • people with profound communication difficulties
  • Aboriginal and Torres Strait Islander peoples
  • people from culturally and linguistically diverse backgrounds
  • people with Autism, profound cognitive disability and behavioural issues
  • people with complex support needs
  • people with co-morbid disabilities, for example intellectual disability and mental illness
  • people who are homeless/at risk of homelessness or in boarding houses/hostels
  • people in custodial settings
  • people without strong informal support networks
  • people who have experienced trauma.

10 Review of the National Disability Insurance Scheme Act 2013, David Tune AO PSM, December 2019 (p.67). 11 Request for Tender - NDIA Independent Assessment Panel – Attachment 1 – Statement of Work (P.11).

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Independent Assessments Submission 275

NSW Government submission The Joint Standing Committee on the National Disability Insurance Scheme Inquiry into Independent Assessments

While it is understood that the assessment focuses on functional capacity rather than diagnosis, an understanding of these contextual factors will help ensure the tools are implemented appropriately for the individual and a decision can be made by the assessors as to whether the tests are valid to use with the specific individual at that time.

It is further noted that the Tune Review’s recommended protections included “accreditation designed and implemented jointly by NDIA & disability representative organisations”12. The NSW Government is not aware of any work being undertaken with disability representative organisations to this end.

Quality assurance

The NDIA has stated it will provide a Quality Assurance Framework to the suppliers to be adhered to in the delivery of the assessment services under the Independent Assessment Panel13. The NSW Government advises that appropriate disability stakeholders should be consulted in the development of the quality assurance process and that the Quality Assurance Framework be made public to instil confidence in the proposed assessment model.

The NSW Government advises that an independent auditing and evaluation process would be appropriate to assure quality of assessments and ensure that positive outcomes for people with disability are being realised.

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

The Australian Government has stated that:

“the assessment tools have been selected if they support decision making as outlined in the NDIS Act 2013, demonstrate strong evidence for reliability and validity, are practical to administer, and work together to describe the person’s functioning including capacity, performance and environmental factors in a holistic way14.

NSW stakeholders have expressed concern that the selected tools do not adequately take into consideration the individual circumstances of the person with disability, and the views of carers, support workers and clinicians. This is critically important in developing a holistic assessment of capacity, particularly where the person being assessed has limited ability to accurately self-report, and informal supports are fragile or unsustainable (see inset box for comments on some of the specific tools).

Stakeholder feedback to NSW Health strongly suggests that the selection of assessment tools should be a matter of clinical judgement as to which tools are most suitable to obtain the relevant information from an individual, with the best assessment tailoring the testing according to the individual context of the person.

The NSW Government supports the use of a combination of tools selected by appropriately qualified clinicians from a suite of tools that are endorsed by appropriate professional bodies. However, the level of individual funding should not be linked directly to a functional capacity score. Determination of an individual funding package must remain open to the consideration of other information and should reflect the potential trajectory of the individual into the future.

12 Review of the National Disability Insurance Scheme Act 2013, David Tune AO PSM, December 2019 (P.67). 13 Request for Tender - NDIA Independent Assessment Panel – Attachment 1 – Statement of Work (P.22). 14 Independent Assessment - Selection of Assessment Tools, September 2020 (P.4).

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Independent Assessments Submission 275

NSW Government submission The Joint Standing Committee on the National Disability Insurance Scheme Inquiry into Independent Assessments

World Health Organisation Disability Assessment Schedule 2.0 (WHODAS)

The WHODAS is a self-report tool and will not be suitable for some people with disability, including those who:

  • lack insight about their disability
  • may under-report or mask their difficulties because, for example, they do not wish to ‘look bad’ in front of, or fear stigmatisation by, an unfamiliar assessor
  • may otherwise answer questions in ways that do not give an accurate picture of their level of disability.

The other challenges identified for the WHODAS include:

  • questions relate to function over the previous 30 days – this does not necessarily identify impairments where a person’s function varies over months and poses a problem if a plan of supports for up to three years is based on the outcome of the data captured over one month
  • the test assumes that everyone undergoing the test has the same goals and needs. The impact of each area covered by the WHODAS will, however, vary between people with different goals and needs
  • it does not consider existing informal supports that have enabled someone to complete a task and assumes this support will continue
  • it was never designed to be a tool to determine access to, or funding for, services either by itself or in conjunction only with other similar self-report tools.

Craig Hospital Inventory of Environmental Factors (CHIEF)

The CHIEF was designed to capture administrative information to inform policy decisions and not for the purposes of capturing data for clinical care assessment purposes. It has not yet been validated or standardised for people with psychosocial disability or intellectual/developmental disability not caused by brain injury.

Vineland Adaptive Behaviour Scales (Vineland)

The Vineland is used to measure the adaptive behaviour of people with intellectual and developmental disabilities, autism spectrum disorders, ADHD, traumatic brain injury, hearing impairment and dementia, however it is not clear whether it is suitable for people with other disabilities, including psychosocial disability.

f. the implications of independent assessments for access to and eligibility for the NDIS

The proposed new approach to NDIS access from mid-2021 is that “the outcomes of an independent assessment will be a primary source of information to help the NDIA determine whether a person with disability is eligible to receive supports under the NDIS”15. If the proposal is accepted, the validity of the assessment will therefore be critically important.

The NSW Government would expect the outcomes of the new assessment process in terms of the number of people gaining/losing access, the quantum of funding for individual participants, and the experience of people found eligible and ineligible, to be monitored carefully. As the Scheme is now maturing and new entry numbers are stabilising, this will be particularly important for existing participants who may be found ineligible for the NDIS after undergoing an independent assessment. Reporting on these outcomes must be shared in a timely way with jurisdictions and/or made public.

15 Information Paper - Improving the National Disability Insurance Scheme - Better Participant Experience and Improved Access and Planning, 24 November 2020 (P.14).

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Independent Assessments Submission 275

NSW Government submission The Joint Standing Committee on the National Disability Insurance Scheme Inquiry into Independent Assessments

The NSW Government would also expect safeguards to be put in place to assist any participant forced to exit the Scheme after an independent assessment to be supported while any review or appeal processes are undertaken and, if affirmed, to transition to new arrangements.

A number of NDIS participants in NSW entered the scheme on the basis they were in defined programs funded by the state, that the Australian Government accepted they met the disability criteria for the NDIS, and that the budget for those services was transferred to the NDIS. There is an expectation that this funding will continue to provide the reasonable and necessary supports these people require into the future.

The Australian Government has stated that:

“the amount of funding in a participant’s plan will be based on their functional capacity as determined through an independent assessment. It will also reflect any relevant environmental factors, including informal supports available to the participant and other contextual factors such as locality or circumstance16.

While the NSW Government supports the use of independent assessments funded through the NDIS to enhance planning decisions, the inflexibility of the proposed model whereby funding packages will be primarily, or exclusively, based on independent assessment results is not acceptable.

It is critical that support needs are determined before funding is finalised. Functional capacity is only one element in determining an individual’s support needs; other factors include personal circumstances, informal supports, goals, aspirations and stage of life. While it is acknowledged that some of this information may be gathered in the assessment process, there needs to be protections included in any changes to the NDIS legislation or rules to ensure that nobody is disadvantaged by a new model.

The NSW Government supports a person-centred approach to planning that may be informed by an independent assessment that:

  • upholds the principle of choice and control
  • assures adequate time is given to assessment and planning
  • ensures that clinical evidence from treating or other assessing health practitioners has a central role in decision making
  • thoroughly considers other evidence gathered through a person’s support network
  • actively engages with people with disability in a manner sensitive to their circumstances.

As with access decisions, the NSW Government would expect the outcomes of any new assessment process to be monitored carefully in terms of changes in plan funding, and the experience and outcomes for participants. Reporting on each of these outcomes must be shared with jurisdictions and/or made public in a timely manner. The NSW government would also expect any participant having their funding package substantially reduced after an independent assessment be supported while any review or appeal processes are undertaken and, if affirmed, to transition to new arrangements.

16 Information Paper - Improving the National Disability Insurance Scheme - Better Participant Experience and Improved Access and Planning, 24 November 2020 (P. 15).

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Independent Assessments Submission 275

NSW Government submission The Joint Standing Committee on the National Disability Insurance Scheme Inquiry into Independent Assessments

h. the circumstances in which a person may not be required to complete an independent assessment

The Australian Government has stated that:

“the use of independent assessments in access and planning processes will apply to all participants and prospective participants … with limited exceptions.”17

The exceptions listed are:

“where the process is likely to do more harm than benefit to the individual, and where the process may pose a safety risk to the individual or assessor, and where there may be concerns about the process producing valid information and other sources and/or forms of information are better suited.”18

The Tune Review notes that “functional capacity assessments would not always be required, for instance if a participant’s functional capacity is stable”19. Stakeholders in NSW have questioned whether a person with disability should be forced to have new assessments conducted by unfamiliar assessors if they have already had assessments done by well-qualified health professionals who have the advantage of knowing the person well.

It would be difficult to create an exhaustive list of the valid reasons that participants and prospective participants should not be required to undertake such an assessment including, for example:

  • potential exacerbation of mental health issues
  • unavailability of suitably qualified assessors, and
  • environmental barriers such as when a person is in hospital or a custodial setting.

The NSW Government supports a flexible approach to the exceptions regime whereby the reasons for an exception are judged on their merit. General guidance should be set out in accessible, publicly available information about situations where the assessment process may not produce valid results and where other sources of information should be sought.

It is important that the exception process is not time consuming, resource intensive or stressful for the people for which it is designed.

i. opportunities to review or challenge the outcomes of independent assessments

The Australian Government has reiterated at senior officials meetings and consultation sessions that under the proposed new model, participants would only be able to seek internal review or appeal of decisions made by the NDIA delegate but not the result of an independent assessment. However, one of the key protections recommended by the Tune Review is the right to challenge the results. The Tune Review states:

“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-approved providers.20”

The NSW Government strongly supports the rights of people with disability to challenge the requirement to undergo, and the results of, an independent assessment as well as the decisions based on the results of any independent assessment.

17 Information Paper - Improving the National Disability Insurance Scheme - Better Participant Experience and Improved Access and Planning, 24 November 2020 (P.17). 18 Information Paper - Improving the National Disability Insurance Scheme - Better Participant Experience and Improved Access and Planning, 24 November 2020 (P. 17-18). 19 Review of the National Disability Insurance Scheme Act 2013, David Tune AO PSM, December 2019 (P.67). 20 Review of the National Disability Insurance Scheme Act 2013, David Tune AO PSM, December 2019 (P.66).

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Independent Assessments Submission 275

NSW Government submission The Joint Standing Committee on the National Disability Insurance Scheme Inquiry into Independent Assessments

The NSW Government supports full transparency in decision making such that a person undergoing an assessment is provided with the full independent assessment report, all other evidence provided to a delegate (including any evidence rejected for consideration by the delegate) and the detailed reasons for a decision. This information should also be provided to the participant’s guardian/nominee.

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

The NSW Government notes there are specific issues that should be considered for a range of groups, including:

  • Aboriginal and Torres Strait Islander peoples
  • people from culturally and linguistically diverse (CALD) backgrounds
  • homeless people
  • people in hospital
  • people in forensic and custodial settings.

The NSW Government supports a more flexible approach to the use of independent assessments that allows for adjustments for particular cohorts of people with disability including those listed above. This includes, but is not limited to, appropriate training for assessors, remaining flexible with regard to who can conduct an assessment, adequately considering input from a person’s support network and allowing exceptions on reasonable grounds. The following examples highlight the importance of this flexible approach.

Assessments for adults and young people in custody

Accurate functional assessments for people with an intellectual disability require corroborative information from a third party (such as a close family member or support worker ) who has directly observed the person over a significant period of time. Most often this will not be available for assessments in custody.

If a decision is taken to interview a person in custody as the basis for a functional assessment, regardless of there being no access to corroborative sources:

  • many will have limited ability to accurately self-report on adaptive functioning, and many will not have the language and/or capacity to complete a functional assessment (this risk is even further heightened for children in custody who may be as young as ten years old)
  • because of its inevitable constraints and removal from the community context, the custodial setting does not provide an accurate model of the independent functioning of the individual outside of that setting
  • many offenders will not provide accurate information to strangers completing the assessment, or will be reluctant to proceed or cooperate without the assistance of a trusted support person. Custodial environments present additional barriers to trust and disclosure.

Until now, the NSW Justice Health and Forensic Mental Health Network (the Network) has played a key role in helping offenders in custody with psychosocial disability to apply for NDIS access. The Network staff undertake clinical assessments and provide reports, that assist these individuals to articulate the range of their needs when they are released into the community. Functional assessments based on information provided by the person with psychosocial disability, even if complemented by their family (if they have any family), are unlikely to provide a comprehensive picture of the person and their post-release needs.

Assessments for Aboriginal and Torres Strait Islander peoples

There are particular challenges for ensuring that independent assessments enable a culturally safe pathway to the NDIS for Aboriginal and Torres Strait Islander people in NSW. Assessors must understand the cultural context for disability, specific to the community including:

  • key social determinants such as education and employment with relevance to disability

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Independent Assessments Submission 275

NSW Government submission The Joint Standing Committee on the National Disability Insurance Scheme Inquiry into Independent Assessments

  • the need to build a trust relationship, noting the intergenerational trauma associated with government practices, such as child removal
  • the tendency of this group to underreport their level of personal need.

Aboriginal stakeholders in NSW continue to call for community-led and tailored solutions for First Nations peoples living with a disability.

Assessments for people from culturally and linguistically diverse (CALD) backgrounds

There are likely to be issues with applicants/participants from CALD communities engaging with independent assessments due to both stigma and communication difficulties.

While the tender documents indicate that interpreters will be available, it is important to understand that many social constructs do not easily translate across cultural boundaries. For example, constructs of confidentiality are different in different cultures. In many cases, it will be a family member responding to a request for the person with disability to undergo an independent assessment.

Many people will be reluctant to engage in the independent assessment process, due to distrust of government agencies. This is likely to be exacerbated, for example, for people who have fled their home countries due to persecution by government agencies.

There is also a risk that people from CALD communities will under-report difficulties with daily tasks due to stigma. In some cultures, the concept of disability is associated with shame, guilt or punishment.

The time set aside for assessments will need to be extended to accommodate both interpreters and the need to spend time to build rapport. The cultural competence of assessors is important – assessors should work with cultural educators who have developed expertise and rapport with particular communities. It is important for assessors to have a cultural briefing beforehand to familiarise themselves with specific family circumstances.

Impact of assessments for people in rural and remote areas

Many parts of Australia will not have enough allied health professionals for an initiative of the scale being proposed to be successfully deployed. This may result in significant delays in obtaining an assessment and, as a consequence, to NDIS supports.

The time and cost associated with travelling long distances is a significant barrier for people with disability living in rural and remote areas.

If the majority of assessments for people living in regional, rural and remote areas will be conducted virtually, there may be implications for the development of rapport and the quality of the assessment. Some people will not have access to, or not feel comfortable using, technology needed to do an online assessment.

Support services to assist people attending and engaging with assessments are not as readily available outside metropolitan areas. Funding will be required to enable assessors to travel to a person’s home, even if it is in a rural or remote location.

k. the appropriateness of independent assessments for people with particular disability types, including psychosocial disability

The NSW Government encourages the Australian Government to remain flexible in the approach to independent assessments noting the challenges in assessing people with complex support needs and particular disability types. The following feedback highlights some of the issues.

Assessment of people with mental illness and associated psychosocial disability

NSW Ministry of Health (Mental Health Branch) consulted with a range of stakeholders around the proposed independent assessments including mental health consumers, mental health peak bodies, public mental health services and experts in relation to functional assessments for people with mental illness. The overall themes that emerged from the consultations were:

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Independent Assessments Submission 275

NSW Government submission The Joint Standing Committee on the National Disability Insurance Scheme Inquiry into Independent Assessments

  • People would welcome access to free assessments if they were not compulsory and were fit for purpose.
  • People are concerned about being excluded from the scheme if they refuse to undergo an independent assessment, particularly people with high levels of mistrust of government, paranoia, lack of insight or trauma backgrounds. The people who are most in need of support, are the least likely to engage.*
  • Mental health consumers specifically raised concerns about the risk of trauma involved in a compulsory assessment process with an unfamiliar assessor, which may exacerbate their mental health issues.
  • Assessments done by unfamiliar assessors are unlikely to be accurate, particularly for a fluctuating mental illness.
  • A high level of skill and experience will be required of any independent assessor. At the scale of the anticipated roll out and the expected remuneration range for assessors, it is likely the work will attract lower level allied health professionals, without the necessary experience.
  • The short period of time for an assessment (on average 2.5-3 hours) is inadequate to build rapport and complete a proper assessment. On the other hand, a three hour session may be too long for some people to sustain focus.
  • Questions were raised about how many booked appointments a person could miss without being penalised under the proposed new model. As part of their disability, it is common for people with psychosocial disability to forget, avoid or otherwise fail to attend appointments.
  • The assessment tools included in the published request for tender will not provide a holistic picture of the person’s life, functional capacity and support needs. Concerns were raised about the appropriateness of self-report tools, such as the WHODAS, for those people who may lack insight into their psychosocial disability.

* Based on the Productivity Commission (PC) Inquiry into Disability Care and Support, the NDIA expected people with a psychosocial disability to make up 13.8% of NSW participants.21 As at 31 December 2020, only 9% of participants in NSW were from this cohort.22

Reasonable and necessary supports

The Australian Government has flagged its intention to make legislative changes and create Category D rules to clarify boundaries between NDIS supports, mainstream services, community and family responsibilities, and ordinary living expenses. These changes would be introduced in tandem with legislative changes to allow the NDIA to compel NDIS participants and prospective participants to undertake independent assessments if they wished to gain or retain access to the Scheme.

Consistent with its commitment to Recommendation 4 of the Tune Review23, the Australian Government should consider a consultative approach involving all jurisdictions, NDIS participants and the wider sector to provide greater clarity on reasonable and necessary supports under the NDIS. Consultation should occur with a view to seeking consensus on what supports should be deemed as reasonable and necessary to support people with disability in pursuit of their goals.

21 NDIA, People with a psychosocial disability in the NDIS 30 June 2019 (P.5). 22 NDIS Quarterly Report to Disability Ministers, December 2020 (P.156). 23 Australian Government response to the 2019 Review of the National Disability Insurance Scheme Act 2013 report, August 2020 (P. 5).

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