Independent Assessments within the NDIS

Submission Uniting NSW.ACT 30 March 2021

Joint Senate Committee on NDIS – Inquiry into Independent Assessments

We would like to thank Uniting (NSW.ACT) staff who participated in consultations and made other contributions as part of the preparation of this submission. © 2021 Uniting (NSW.ACT) Address: PO Box 7137, Silverwater NSW 2128 Website: www.uniting.org

Contents

• About Uniting ………………………………………………………………………………………………………………………… 4
• Summary of key points ……………………………………………………………………………………………………………. 4
• Specific responses to the Inquiry’s Terms of Reference ………………………………………………………………. 5
• Conclusion …………………………………………………………………………………………………………………………… 16
• Recommendations …………………………………………………………………………………………………………………. 16

About Uniting

Uniting is the community services and advocacy arm of the Uniting Church in NSW & ACT. The organisation delivers services that cover all ages and stages in life – from early learning to aged care – and reaches over 100,000 people each year. Since 2015, Uniting has worked as an NDIA Partner in the Community to deliver Local Area Coordination (LAC) services in Western Sydney, Northern Sydney, Nepean-Blue Mountains, Illawarra-Shoalhaven, Southern NSW and (since 2020) Hunter-New England. This community-based role has given Uniting a deep understanding of the needs and circumstances of people with disability as they engage with the NDIS and develop and implement their plans. Uniting is also a Registered Provider of NDIS supports to over 500 NDIS participants primarily as a provider of Supported Independent Living and funded Support Coordination across metropolitan Sydney and the Central Coast of NSW. It has been delivering supports to people with disability for over 25 years.

Summary of key points

Uniting welcomes the opportunity to make a submission to the inquiry into Independent Assessments (IAs). We support IAs in principle and see them as being in line with the insurance principles on which the NDIS was based and can contribute to addressing some longstanding inconsistencies and inequities in the current arrangements. However, there is a need for a deeper involvement of stakeholders in the co-design of IA implementation. We see risks in the current proposed implementation arrangements and are concerned about the lack of detail provided so far on how IAs will be delivered on the ground. We have read the NDIA and DSS submission to the Senate inquiry and note that it is intended to address “misconceptions and misunderstandings about the details of independent assessments and how they will be implemented”. While their submission includes some reassurances about the policy intent of the changes, it still fails to provide enough detail about how exactly these changes will work in practice. In preparing our submission, Uniting has consulted its frontline LAC staff and Support Coordination staff, drawing on their deep understanding of the needs and circumstances of NDIS participants. We have also conducted focus groups with NDIS participants and their carers to get their views on the reforms. Some were also able to share their experiences in the IA pilots. We highlight in our submission some of the areas where detail on the reforms is lacking, but we also have broader concerns about the rationale and apparent policy direction of the reforms:

• The reforms are being justified as solutions to problems which they will not in practice fix
  • e.g., while they are justified as addressing inequity in access, many vulnerable people struggle to establish their basic eligibility for the Scheme and will not even get to the IA phase.
• The reforms are a shift away from a person-centred approach that is built on participant goals and aspirations and towards a more generic system of support based on predefined “customer profiles”. The NDIA has chosen to re-interpret – and is perhaps planning to remove – Section 34 of the NDIS Act and the reasons for this need to be fully justified. As Professor Bruce Bonyhady, one of the architects of the NDIS, has pointed out: this is “absolutely contrary to what people with disability, their families and carers fought for – and thought they had won”¹.
• That contrary to the NDIA/DSS assurances that the reforms offer “increased transparency over how and why decisions are made”, IAs will operate as a “black box” – assessment outputs will be an unchallengeable part of the NDIA delegate’s decision making and not in themselves open to any external scrutiny (even by the applicant).
• It is unclear if participants will have access to the details of how their individual IAs have been determined (i.e., access to all the “inputs” from the tools that were used to produce the IA “output”). If they do not, and the inner workings of the “black box” remain opaque, they will be unable to determine what relevant additional information or evidence they may need to

— footnote — ¹ Professor Bruce Bonyhady, An analysis of the NDIA’s proposed approach to Independent Assessments – A response to the National Disability Insurance Agency (NDIA) Consultation, Melbourne Disability Institute, February 2021, p.11

present to the NDIA delegate or to appeal decisions. In other words, although they can still appeal a decision, they may not be able to appeal – or even see – the evidence on which that decision is based.

• The validity and accuracy of the proposed IA tools as a means of determining reasonable and necessary funding consistent with the NDIS Act has not been established. No detail has been provided on how tools will be combined to produce a final assessment when they were not designed to be combined in the way the NDIA proposes. As one disability advocate told Uniting – “they appear to have been stitched together by the NDIA like Frankenstein’s monster”.
• No information has been provided on plans for conducting IAs of existing NDIS participants. The pilots found eight per cent of existing participants were in fact ineligible, so significant numbers may be affected by such plans. These people will need support in transitioning out of the Scheme. There is also a risk that exiting large numbers will reinforce community perceptions that the reforms are really about cost-cutting.
• Although the NDIA’s submission to the Senate Inquiry insists that the changes will not “result in fewer people, receiving less support” (p.13), cost-cutting does appear to be the primary driver of the reforms. What is more, this cost-cutting is being pursued in a way that threatens to undermine fundamental principles of the Scheme - its rights-based, person-centred approach, its focus on directly supporting individuals to achieve their goals and aspirations, and its administrative transparency. The objective appears to be to revert to the type of top-down welfare model of disability that the NDIS was intended to replace.

Specific responses to the Inquiry’s Terms of Reference

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

Evaluation data from Independent Assessment pilots are lacking

Uniting was involved in the NDIA’s first Independent Assessment pilot and found participants to be generally positive about the experience of the assessment process itself. However, it needs to be stressed that no participant plans were built or funding decisions made that were based on these assessments. The evaluation simply measured the reaction of participants to their contact with an independent assessor and offered no insight into how IAs might affect their experience of the NDIS as a whole. The adequacy of support provided through these plans is the true test of the new arrangements from the perspective of participants and this remains untested.

We also note that detailed evaluation data on the pilots as a whole and on the experience of different participant types have not been made available. The pilots involved a relatively small number of people drawn from just three disability cohorts, and only one in five participants in the pilots provided feedback. Without comprehensive evaluation data, one cannot be confident that the reforms offer better outcomes for different participants or improve the consistency and equity of the Scheme as a whole.

In one of the focus groups conducted by Uniting for this submission, we learned about the experience of a participant in the IA pilot which illustrates the need for a more thorough evaluation of the IA approach. The mother of a 14-year-old with a lifelong physical disability described how the assessor was unsure how to administer one of the IA tools – the child wears Ankle Foot Orthoses (AFOs) to assist mobility, but the assessor did not know whether they should be used during the assessment. The mother explained that her child’s ability to mobilise could only be assessed without the AFOs. In the end, the child was assessed twice – once with and once without – but the mother does not know which one would be used to complete the assessment and determine a plan budget. Importantly, if such information about assessment tool inputs cannot be accessed under the new system – see our response to (i) below – NDIS participants may well be denied support to which they are entitled.

See also responses to (f) and (g) below.

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

The NDIA should apply the lessons learned from similar reforms to the Disability Support Pension

We note that the introduction of IAs shares some similarities with the 2015 reforms of the processes related to the Disability Support Pension (DSP). These reforms saw the introduction of an extra level of assessment – a Disability Medical Assessment (DMA) – conducted by a government contracted doctor (GCD) after eligibility for DSP had been determined. Prior to 2015, DSP eligibility and the level of support to be provided were usually determined through a Job Capacity Assessment (JCA) conducted by health and allied health professionals of the Department of Human Services (though assessor’s recommendations could be varied by the Human Services delegate).

The introduction of an additional assessment conducted by external contractors in the processing of DSP applications provides useful lessons for the NDIS, including managing risks and ensuring that access is not made more difficult for deserving applicants. Also, monitoring and evaluation systems need to be well-defined at the outset to avoid problems experienced with the DSP reforms.

For example, the Australian National Audit Office (ANAO) noted that the departments of Human Services and Social Service had performance measures that were only “partly effective” in assessing the delivery of the DSP. In particular, the timeliness measure was “biased” as it excluded claims with processing times over 84 days². The ANAO also noted that a review of “the Government-contracted doctor measure… found that the changes added about six weeks to the time taken to grant a DSP claim and three and a half weeks to reject a DSP claim”³. The timeliness performance measure agreed by the departments in January 2015 was intended to be only provisional until Government-contracted assessments were bedded-down, but after four years these problematic performance measures were still in place. The lesson here for the NDIS reforms is the need for IA performance measures to be much clearer at the outset and used to ensure participants in the Scheme are not disadvantaged. No IA performance measures have yet been shared.

The ANAO also noted deficiencies in the evaluation of the effectiveness and efficiency of the DSP reforms. The ANAO found that the evaluation that had been conducted on the changes was limited in scope and, while the two departments “consult extensively and with each other” they “may benefit from greater engagement with external stakeholders when evaluating the impact of policy and process changes” ⁴. It highlighted the importance of evaluations that would focus on effectiveness (including cost-effectiveness) and efficiency of the reforms. This lesson should apply in the context of the present reforms to the NDIS, especially given the limited evaluations conducted for the IA pilots. Such evaluations need to reflect the stated rationale and program logic for the introduction of IAs and measure their success in achieving such goals as improved and equitable access and enhancements of both participants’ experience and the Scheme’s efficiency.

The reforms also led to a renewed focus on eligibility reviews of existing DSP recipients, using DMAs. The 2016-17 Budget required reviews of 30,000 DSP recipients per year for three years with 10 per cent of recipients reviewed expected to have their payments cancelled⁵.

This reduction in DSP recipient numbers was therefore clearly signalled by the Government when they were introduced. In the interests of transparency, NDIA’s own plans for participant reviews should be made clear along with any targeted budget savings. We note that the NDIA/DSS submission to the inquiry responded to concerns about funding which it had received via its consultations (p.13). It explained that the reforms were not intended to reduce overall program expenditure or to reduce participant numbers. However, it did not say anything about the situation of current participants who,

— footnotes — ² ANAO, Disability Support Pension – Follow-on Audit, Auditor-General Report No.13, 2018, p.8 ³ Ibid, p.53 ⁴ Ibid, p.61 ⁵ Department of Social Services, 2016–17 Budget Measure: Disability Support Pension, available from https://www.dss.gov.au/our-responsibilities/disability-and-carers/budget-measures. See also ANAO report cited above, p.45

as a result of future IA reviews, might be found to be no longer eligible. Note that some eight per cent of participants of the IA pilots were in this situation (though none of these exited the Scheme as a result of the pilots).

As we point out below in (c), there is a potential that an overly ambitious program of reviews will exacerbate skill shortages; and as we point out in (l), there will be some ramifications if large numbers of current NDIS recipients are cut off.

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

The Independent Assessment approach may exacerbate workforce shortages

We are concerned that the scale of the new IA system will exacerbate existing shortages of Allied Health Professionals, especially, but not exclusively, in thin markets where people can face long waiting lists. Uniting LAC has been dealing with these market issues for some time and, despite repeatedly raising concerns with the NDIA over the last four years, the problem remains⁶.

With all new applicants requiring assessments from 1 July 2021 and over 430,000 current participants requiring re-assessment at some point in the (near?) future, there is a risk that the system will be stretched and that access to services by NDIS participants and others in the community will be reduced. The original Productivity Commission report on disability care was conscious of this risk and highlighted the need for government intervention to avert market failure. In September 2018, the Joint Senate Standing Committee on the NDIS highlighted NDIA failures in “market stewardship” and a lack of a national strategy to grow the workforce⁷. Similarly, a May 2020 submission by Allied Health Professions Australia to the Joint Senate Standing Committee’s inquiry into the NDIS workforce noted “a lack of current mechanisms to address areas of known workforce shortage, particularly those in rural and remote areas (though we note that thin markets and workforce shortages exist in metropolitan and peri-urban areas as well).”⁸

It is important to note that the evaluation of the IA pilot did not consider the broader impact of the changes on local systems and labour markets. More consultation is needed and local implementation strategies should be developed before the planned changes are introduced.

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

Mechanisms to measure the quality, validity and accuracy of assessors and their assessments will be of critical importance. We note the NDIA has referred to a Quality Assurance Framework for the IA panel, but no details have yet been shared on what this framework will include. It needs to be co-designed with stakeholders and, most importantly, needs to be in place before the IAs commence. The NDIS has a history of trying to “build the airplane while it is hurtling down the runway” and this should be avoided this time.

Uniting’s focus groups found that participants had concerns about the qualifications of assessors who may need to assess people with disabilities outside their professional experience and skill set. The example was given of a participant with schizophrenia who might prove to be difficult to assess if the assessor had no prior relationship or knowledge of the individual. In assessing this person, an allied health professional without specific skills in this disability could inadvertently trigger or aggravate that person’s condition, leading to challenging behaviours the assessor might struggle to manage.

— footnotes — ⁶ For example, Uniting’s RPOS experience in working with rural and regional communities of geographic isolation note waiting periods of up to 18 months for paediatric and allied health assessment or requiring flights to Sydney for specialist assessment. ⁷ Commonwealth of Australia, Joint Standing Committee on the National Disability Insurance Scheme, Market Readiness for provision of services under the NDIS, September 2018. ⁸ https://www.aph.gov.au/DocumentStore.ashx?id=176c330d-0240-4320-912c-3980cff09b07&subId=680514

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

In principle, we support the use of standardised assessment tools to understand the impact of disability on functional capacity. However, we have concerns about the practical application of these tools and believe that more evidence is needed on the validity and “fitness for purpose” of the selected tools as a means of determining reasonable and necessary funding consistent with the NDIS Act and with the Participant Service Charter.

The validity of the selected tools for their intended purpose needs to be tested

The NDIA’s paper “Independent Assessments – Selection of Assessment Tools” (September 2020) outlined the process for selecting the tools and analysed them against an Independent Assessment Framework developed by the NDIA. This included a review of the types of assessment tools that are available, but there are concerns about the depth of this review. For example, the review could give a tool the highest ranking on the basis of just one study “of excellent quality” and involving a sample of only 100 patients (p.21). Given the size of the NDIS, this sample seems to be too small. The validity of the selected tools when applied to multiple disability types needs also to be demonstrated, particularly as some were designed for people living with specific disabilities9.

There are concerns that the tools will be applied in a way that will not allow enough time to truly

understand participants’ needs and circumstances

Uniting’s focus groups highlighted concerns that a brief connection with an assessor using standardised tools may not provide enough time to get a thorough understanding of participants’ needs and circumstances. There may be a need for follow-up meetings with individuals or to get additional information from their network of supports.

The NDIA’s submission again attempts to reassure people that there will be no time limit on assessments and that they can be conducted over one or more days. However, in any pay-per-transaction government service contract of this type, there will inevitably be pressure to complete assessments quickly, to maximise profits and to meet contracted KPIs. More information is needed to demonstrate how the NDIA plans to ensure that an appropriate time is devoted to the assessment task for each participant. See also our response to (j) below which highlights the specific case of Aboriginal people and the need to invest time in building relationships.

No detail has been provided on how multiple tools will be combined to produce an assessment result

As the selected tools were not designed to be used in combination with other tools, more information is needed on the novel processes presumably developed by the NDIA to do this to determine reasonable and necessary supports. For example, the evaluations of the pilots indicated that a “typical population range was set for each assessment tool in order to determine a participant’s likely functional capacity”10. As multiple tools will be used, how will results be combined if a person is found to be inside the typical range using one tool and outside the range in another? Or if judged to require a low level of support in one and a high level of support in another?

These novel, untested processes need to be made transparent and their validity as a determinant of NDIS support fully evaluated. As was discussed in (a) above, the validity of using these tools to determine the appropriateness of support was not evaluated at all in the pilots.

9 For example, Vineland 3 (Domain Version) was developed to assist with the diagnosis of individuals living with intellectual and developmental disabilities, autism spectrum disorder and development delays. The Lower Extremity Functional Scale (LEFS) was originally designed to assess lower limb function of individuals with lower-extremity musculoskeletal dysfunction.

10 NDIA, Independent Assessments – Pilot learnings and ongoing evaluation plan, September 2020, p.14

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The process for selecting which tools will be used for each individual has not been made clear and there are concerns that some may be applied without regard to an individual’s manifest capacity

The system needs to ensure that the tools chosen are appropriate to each individual. The NDIA website indicates that “depending on their age and disability, new and existing NDIS participants will undertake three or four of these tools as part of their independent assessment”11. No information has been presented about how these tools will be selected for each individual.

Forcing people with disability to undertake assessments that do not relate to their situation would be both disempowering and disrespectful. It risks reinforcing the stereotype that all people with disability lack the capacity to understand or have an opinion about the impacts of their disability. It might also breach the “Respectful” principle detailed in the Participant Service Charter. For example:

• The Vineland 3 (Domain Version) requires that another person who knows the participant and understands their life situation very well responds to the assessment on behalf of the participant, even if the participant is capable of responding to assessment questions about the impacts of their disability on their functional capacity across all of the life domains. Inappropriate use of this assessment tool risks reinforcing the stereotype that people with disability are not capable of representing themselves or taking care of their own or anyone else’s needs. Using such a tool in the situation of a person with high intellectual functional capacity is therefore inappropriate and breaches the NDIA’s Participant Service Charter.
• The assessment framework must give choice and control to the participant to opt in or out of types of assessments so the impact of disability on the participant’s functional capacity is captured accurately and is not diluted by extraneous and unnecessary information. The NDIA must have reasonably necessary grounds to collect or request information from a participant or from other persons for the purposes of decision making as per the NDIS Act 2013 (Cl 26, 50, 53, 55). We argue that it is not reasonably necessary to collect information about a participant that is not related or relevant to the impacts of disability on their functional capacity.

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

The problem of inequity in accessing the NDIS is not fully addressed by the changes

While the planned changes are intended to lead to fairer and more equitable access to the Scheme, the introduction of IAs only addresses the issue of consistency in decision making about the funding of plans – not inequity in accessing the Scheme in the first place. IAs may address government concerns about the Scheme’s sustainability and the consistency and equity of funding decisions, but individuals will still face systemic inequities that can prevent or delay their access to the Scheme. This inequitable access to the NDIS is presented as a justification for the reforms, but the reforms themselves fail to address this issue in any way.

Before prospective participants can even be assessed, they need to provide evidence of their disability, including documentation from their treating health professional as to whether their impairment or impairments are permanent. People who have access to private medical services – or who live in wealthier, better serviced localities - are typically able to get this documentation more quickly and easily and often to a higher standard than those who must rely on the public health system or who live in less well serviced regions. These people can face long waiting lists and the quality of the documentation provided can also be an issue. The reforms do not change this situation.

Note that while the issues above relate to socio-economic or geographic differences, equity of access also has a cultural dimension which the planned changes may not have fully considered. These are discussed below at (j).

11 https://www.ndis.gov.au/participants/independent-assessments/independent-assessment-toolkit Accessed 30 March 2021

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Uniting’s focus groups revealed how much frustration participants and carers felt at the prospect of having to undergo continual assessments to maintain support

• “Having to prove your eligibility to the NDIS again and again creates mistrust”
• “Having a kid with disability, you spend your whole life justifying things and going to appointments. It’s not a fun part of parenting a kid with a disability. Justifying why you need something again, that’s the hard part. Having to do that yet again, after doing it how many times in the past, it’s just not fair”
• “What does it teach our kids when all they see relating to them is stress? We have to drag them to this appointment, drag them to another appointment, etc. Our kids pick up on the negative energy, it has the potential to destroy the child and parent relationship”

g. The implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports.

The changes represent a shift in individual planning and decision making from a person-centred

approach that is built on participant goals and aspirations and towards a more generic system of support

Section 34 of the NDIS Act sets out how the NDIA CEO must determine “the reasonable and necessary supports that will be funded”. It describes six criteria, the first of which is: “the support will assist the participant to pursue the goals, objectives and aspirations included in the participant’s statement of goals and aspirations”.

Section 7 of the current Planning Operational Guideline clearly states that “the participant’s statement of goals and aspirations is critical to the development of a successful statement of participant supports” and that “the link between participant’s statement of goals and aspirations and the statement of participant supports is explicit, and ensures that the participant’s statement provides the important foundation for the subsequent selection of supports”. This statement also provides a mechanism to consider the environmental and personal context of each participant – it must identify such things as “the participant’s living arrangements, informal and other community supports and social and economic participation” to provide a “comprehensive picture of their life circumstances, future goals and aspirations and existing supports”.

Under the new model, participant goals and aspirations are no longer central to the process and – as far as we can see - will only be considered after the IA has been completed and a funding level determined. While the NDIA’s consultation paper states that “participants will be supported to exercise choice and control over how they use their personalised budget to pursue their goals”, the NDIA has now suddenly decided that “the NDIS Act does not provide that a participant’s goals or aspirations determine their reasonable and necessary supports”. In what looks a lot like bureaucratic doublespeak, goals will be “supported” but will in no way “determine” what support is given12.

This is a significant change and seems to be at odds with the NDIA/DSS assertion that the reform offers “a more empowering, participant-centred planning experience”. The process goes from the existing requirement to link all NDIS support to a participant’s goals, to an approach where goals are merely incidental to the process – e.g., the NDIA consultation paper suggests that participants can change their goals at any time via the participant portal.

Not enough detail has been presented on how the implementation of this change can be reconciled with the requirement, set out in Section 34 of the NDIS Act, that goals, objectives and aspirations be part of the process of “specifying, in a statement of participant supports, the general supports that will be provided, and the reasonable and necessary supports that will be funded.” If it cannot be reconciled with this Section of the Act, the legislation will need to be amended and perhaps this is what the NDIA plans to do.

12 See NDIA consultation paper on Planning Policy for Budgets Flexibility, section 3.4.3

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Far from being “participant-centred”, the changes appear to reflect a deliberate philosophical and policy shift away from a system that explicitly responds to the individual goals and aspirations of people with disability and towards a more generic system of support that uses predefined customer profiles to determine and, it would appear, reduce support. In our experience, people with disability greatly value how the NDIS seeks to directly and explicitly support individual goals and aspirations and how it is truly participant centred in this respect. As Professor Bruce Bonyhady, one of the architects of the NDIS, has pointed out: the change is “absolutely contrary to what people with disability, their families and carers fought for – and thought they had won”.13

Uniting’s focus groups revealed how strongly participants and carers felt about this change: • “Reverts back to the ADHC model of stereotypical funding” • “Shifts the power – my daughter is no longer the decision maker without goals” • “Loses recognition that people with disability are people” • “Lack of transparency and goes against what the NDIS stands for” • “My daughter loses choice and control and we will have to go back to self-funding items that are not funded through NDIS” • “My child will no longer be able to keep up with their peers” • “As a parent, it says to me my work and contribution that I have made with her doesn’t matter. For my daughter who is a young person it’s just saying, you’re not good enough and you don’t matter” • “My child’s goals are no longer hers. Her goals are now irrelevant”

In justifying its reforms, the NDIA has made numerous references to both the 2011 Productivity Commission Report on Disability Care and Support and to the 2019 Independent Review of the NDIS Act (the Tune Review). Neither of these reports suggest that participants’ goals and aspirations be jettisoned in the way that the NDIA now proposes. In fact, they both emphasize their importance in determining funding and developing plans. For example:

• In considering the “future focus” of the Scheme, Tune highlights the importance of “resolving ambiguity in the construction of supports so plans meet participant expectations and always have a clear link to the participant’s goals and aspirations” (Section 2.49b).
• Similarly, in discussing how “the careful use of assessment tools is critical”, the Productivity Commission report stated that, in assessing the reasonable and necessary supports people require, “people would be asked …what their goals are and what they need” (p.21).
• In Recommendation 3, the Productivity Commission also reinforced the “bottom-up” not “top- down” intent of the Scheme – “the person with a disability – and/or their support network or chosen disability support organisation – would create a personal plan and a concrete funding proposal to the NDIA that outlines the person’s goals and the type of support that would be necessary and reasonable” (p.72).

The NDIA presents the reforms as being in line with these reports, but both documents are quite clear about the centrality of participant goals to the planning and funding processes. NDIA needs to explain why it has chosen to accept some elements of the reports but to ignore others.

Uniting strongly believes that Section 34 of the NDIS Act needs to be maintained and the reforms need to preserve the centrality of participant goals and aspirations. The Scheme needs to continue to directly and explicitly support participants to achieve their goals. Reflecting the original intent of the NDIS Act, the current Planning Operational Guideline (7.5) promotes a “strengths-based approach” that supports participants to identify their goals, objectives and aspirations and to “focus on untapped gifts, positive attributes and underdeveloped capabilities which can direct a participant’s potential for positive functioning”. Without such a focus, the Scheme risks reverting to narrower, generic supports based

13 Professor Bruce Bonyhady, An analysis of the NDIA’s proposed approach to Independent Assessments – A response to the National Disability Insurance Agency (NDIA) Consultation, Melbourne Disability Institute, February 2021, p.11

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solely on a functional assessment of an individual’s “deficits” and founded on outmoded models of disability.

The reforms result in a decision-making process that is less transparent

The current model, supported by Section 34 of the NDIS Act, gives participants a level of certainty about what funded supports have been included in the budget and, just as importantly, what supports have not been included. Even though there is some automation in the generation of “Core Supports” from “Typical Support Packages” (TSP), all elements of the budget must be justified through the “reasonable and necessary” (R&N) criteria. The level of justification and evidence of decision-making provides a basis for participants to seek a review of decisions and provide other evidence on additional supports they believe are reasonable and necessary.

The proposed new model has no transparency for participants to understand how the draft budget is derived from their IAs. Participants are to receive an allocation of flexible funding in the draft budget and the NDIA Consultation Paper states that this component of the draft budget is “final”14. The Participant Services Charter requires the NDIA be Transparent with participants in how they make decisions. The Consultation Paper clearly details that the NDIA will not be transparent with participants as to how the flexible component of the draft budget is derived, allocated or calculated.

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

Opportunities to review or challenge the outcomes of IAs will be greatly reduced

Since the rollout of the NDIS, a large contributing factor to the feelings of choice and control for a participant is the ability and option to review decisions made about them. On page 23 of the NDIA’s Access consultation paper, it notes that the outcome of an independent assessment will not be reviewable by the Administrative Appeals Tribunal (AAT). This is so because, while the current access decision involves an internal assessment process, outsourcing assessments means they may no longer be subject to internal administrative review.15

The effect of this change is to make it much more difficult to appeal an assessment. The NDIA’s Access consultation paper states that the NDIS will not fund a new assessment if a participant does not agree with an otherwise “sound and robust” assessment. Details on what constitutes a “sound and robust” assessment have not been provided. We are concerned that the NDIA intends to consider all IAs to be “sound and robust” by definition.

Details have also not been provided on whether participants will be given access to all the tools used and information gathered as part of their assessments (e.g., recorded answers to questions asked or judgements made based on observations) so that they can evaluate how “sound and robust” the assessment was and whether it adhered to the assessment framework. Indications so far have been that IAs will instead be treated as a “black box” – a process that will remain opaque to participants and which produces an unchallengeable input to the NDIA decision making process. While the NDIA/DSS submission includes reassurances that people can “request a review or appeal decisions made by the NDIA, if they feel the decision is wrong” (p.17), the IA is clearly intended to be the key input in this decision. If the IA “black box” cannot be opened and examined, what hope would an appellant have to

14 Additional fixed R&N funded supports can be added for certain high-cost items only subject to specialist assessment and reports. 15 Note that the Commonwealth Attorney-General has stated in Australian Administrative Law Policy Guide (2011) the Key Principle regarding outsourcing of government services is “Where a person would have access to internal and/or merits review before an agency contracted out government services, those avenues of review should continue to be available” (p.17). Outsourcing a government information collecting and decision-making process does not make these processes exempt from internal review. The agency outsourcing the services remains responsible for the decision-making even if conducted by an independent third party. If participants are not satisfied with the outcomes of the agency’s internal review processes, they can pursue the matter through AAT.

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present a compelling case to modify this decision? The real-life example included in our response to (a) above illustrates this well – i.e., an assessment tool was used twice in a pilot, once with a participant using Ankle Foot Orthoses and once without, but the participant never learned which was used in the final assessment report.

In practice, rather than continue to challenge their assessment, vulnerable people with few support networks will probably disengage at this point. This may help reduce the number of “unscheduled reviews” and AAT hearings, but may also result in the Scheme itself becoming less equitable. For example, we know from our experience in the field that well-resourced people may be able to demand and successfully obtain this information (perhaps through a Freedom of Information claim), privately fund an alternative assessment, and successfully appeal a decision.

Uniting’s focus groups revealed how strongly participants and carers felt about reducing their opportunities to review or challenge IA outcomes: • “I am just so shocked that that’s even being considered, that you can’t appeal it, because people are human, and people make mistakes, we must be able to appeal these decisions” • “It takes away any independence you have if can’t appeal, there goes your rights, it’s not person centred, it’s a welfare model” • “It’s un-Australian, even when you go to court, you have the right of appeal” • “We live in a society where everyone has a fair go. We always have the right of appeal. If you take away my right to appeal something, does that mean you’re going to take away everyone else’s rights (people without disability)? Is un-Australian” • “Mistakes will go unchallenged”

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 transactional nature of the Independent Assessment process may result in some vulnerable

people not accessing the Scheme.

Equity of access to the NDIS also has a cultural dimension which the planned changes may not have fully considered. For example, Uniting LAC has invested much time into developing relationships with Aboriginal & Torres Strait Islander communities and organisations to ensure that our services are delivered in a culturally responsive way that promotes equitable access to the NDIS by Aboriginal people with disability. The Tune Report pointed out that there are specific engagement risks for such cohorts - for example, distrust of government agencies is common in Aboriginal & Torres Strait Islander communities and some Aboriginal people might refuse to undertake an IA and so not be able to access the NDIS. Different cultural issues and engagement risks also need to be considered in working with other groups, such as people from Culturally and Linguistically Diverse (CALD) Communities.

We understand that independent assessors will be required to have completed “appropriate internal training”, but what such training includes is unclear and may neither fully address such engagement risks nor consider local Aboriginal & Torres Strait Islander community issues. As the Tune Report said the “panel of assessors must be sufficient to mitigate any engagement risks for these cohorts as well as any other issues relevant to specific locations, communities, or for particular disability types”. The NDIA/DSS submission to the inquiry addresses this vital issue in only a superficial way – it says assessors “will have culturally safe approaches” (p.14).

In working with CALD communities, there are other risks that need to be understood and managed. For example, use of interpreters can cause problems in some communities. In our focus groups, we learned that some participants choose not to use interpreters even when they are needed – some fear that the

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interpreter is from their community and will divulge personal information that adds to the stigma they can face in some CALD communities. Uniting staff have also had experience with interpreters who do not interpret exactly what the participant has communicated and instead overlay their own values, opinions, and judgements.

The NDIA needs to make it much clearer how the planned changes will mitigate these risks. It is also unclear whether, in the development of these new arrangements, the NDIA has adhered to the key principles of its own Aboriginal and Torres Strait Islander Engagement Strategy16 – i.e., that “Aboriginal and Torres Strait Islander peoples with disability are central to the design, delivery and evaluation of policies and services” and that “Elders and representative organisations” were involved “for strengthening trust in government efforts”. We note too that there have been no data shared from the evaluations of the Independent Assessment pilot about the experience of Aboriginal & Torres Strait Islander participants or people from CALD backgrounds.

In our experience, significant extra time is often needed to build trust with such participants before services can be delivered. We are concerned that the transactional nature of the Independent Assessment process will result in some people – especially Aboriginal & Torres Strait Islander people – not accessing the Scheme. As one focus group participant said: “The Aboriginal community will not even try to access the NDIS now”.

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

The appropriateness of IAs for some groups needs to be reconsidered. Uniting works with some people who live in Supported Independent Living (SIL) arrangements who have undergone a lifetime of assessments, having undergone government-mandated functional assessments for entry into SIL. Similarly, young people 12 to 25 years old with psychosocial disability due to their trauma history require a specific and specialised approach which a three-hour assessment using standardised tools will not provide. These groups risk becoming more marginalised if IAs are used as a blunt instrument.

Uniting’s focus groups raised other concerns about the appropriateness of IAs for some groups. For example:

• Some people not only have “good days” and “bad days” that may not be adequately reflected in a point-in-time assessment, but also may not be able to flag the variability of their capacity because they do not even acknowledge that they have bad days. Without really getting to know individuals over time and with input from their support networks, funding and supports provided may be inadequate.
• Some participants with schizophrenia may find the whole IA process so daunting that it may trigger their condition. One participant we support worries about meeting someone new (e.g. meeting a planner 3 months ahead of meeting). Introducing another meeting/person could be detrimental to this participant who has intrusive thoughts that escalate their behaviours which then impact the support staff that are connected with the participant in supporting their daily life.

Such customers with complex disabilities should be exempt from completing the IAs. Instead those clinicians already engaged in supporting the participant and who have built a relationship with the participant might be a more reliable and appropriate reference point for functional capacity.

16 NDIA, Aboriginal and Torres Strait Islander Engagement Strategy, p.8

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l. Other related matters

Plans for the reassessment of current participants need to be made known

We note from the evaluation of the first pilot, that the Independent Assessment pilots found eight percent of current participants to be in fact ineligible for NDIS support. When the reforms are fully implemented and all existing participants are re-assessed, it therefore seems likely that, based on an expected figure of 500,000 in the Scheme, some 40,000 current participants will be cut off.

This raises some important questions. First, to what extent have the reforms been developed specifically to manage Scheme expenditure? With support withdrawn from tens of thousands of people following the introduction of the reforms, negative publicity will be generated, and, rightly or wrongly, the community will perceive the changes as mere cost-cutting.

Second, there is the question of what to do with the 40,000 people who may be cut off. LACs may have a role in connecting these people to alternative mainstream services, but in many cases, there may no longer be many alternatives. If the reassessments are conducted quickly, and large numbers of former NDIS participants require alternative support, LACs may also struggle to respond to the demand.

The reforms may lead to a lack of continuity of support to participants, especially in the early stages

Under the new arrangements, people seeking access to the Scheme may have a more disjointed customer experience, especially if the nature and timing of support currently provide by LACs changes. The reforms have been promoted as streamlining the administration of the Scheme, but rather than eliminating processes along the participant pathway (and therefore the associated costs), the changes reorganise, re-assign and re-badge them. Essentially, there will be a shift in responsibility, cost, and risk from current LAC providers to members of an approved panel of IA providers. Unlike LACs, IA providers conduct their assessments and have no real relationship with participants.

From the participant’s point of view, it may be that the Independent Assessor will be their first real face-to-face contact with the Scheme. Once they receive the outcome of their assessment and prior to their planning meeting with the NDIA, they may need help to understand what it means. Some may have had contact with LACs, but not necessarily. The customer journey in these crucial early stages may be confusing and without supports.

In considering how an IA approach might work, the Productivity Commission report suggested a preliminary meeting with person including the assessor and LAC “to better understand their circumstances”. Later, the assessment meeting would take place, presumably without a LAC, but at least a relationship would be established with someone who could guide the participant through the early stages.

The Planning Policy consultation document suggests LAC “can attend” the meeting with the NDIA planner after assessment, but it is unclear how this would be organised and whether the LAC had even met the person at this point. More clarity is needed about these processes.

Mechanisms for participants to exercise choice and control in the IA process

The NDIA/DSS submission to the inquiry highlighted that “choice of independent assessors” was among the concerns raised through the consultation process. In addressing this concern, the submission explained that there will be a number of approved assessors across Australia and that “as much as possible, people will have a choice about who they work with to assess their functional capacity” (p.14).

This is broadly reassuring, but again no detail is provided on what this means in practice. How will this choice be presented to participants? Through a menu that summarises their options? Who is responsible for presenting the options – presumably the contracted provider? Will participants be able to choose an assessor with expertise in their disability? Does “as much as possible” really guarantee any choice at all?

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Some final quotes from Uniting’s focus groups with participants and carers • “We’re putting people back in boxes and if you don’t fit in the box, people will be left behind” • “You spend your whole life justifying your child’s needs, now I’m having to go into bat again” • “Asking the NDIS Participant to step out of the room to complete one of the assessments is just plain insulting” • “No access to NDIS = no work = lose connections to community = takes away ability to live independently” • “As a parent there’s been heaps of times in my life that I felt overwhelmed and trapped and this is not based on my daughter’s disability. The thing that made me feel most trapped, was that there was no change in sight. Feeling trapped, it halts so much. You can’t plan for the future if you can’t even plan the day”

Conclusion

Uniting supports the introduction of Independent Assessments and wishes to make a constructive contribution to ensuring the reforms work. However, without clear step-by-step descriptions of how the reforms will work in practice and a more convincing justification for deviating from the original philosophy and person-centred approach of the Scheme, Uniting cannot support the changes in their current form.

Many of the issues and procedural gaps outlined in this submission can best be explored and resolved through a co-design process that involves stakeholders. We believe we are well positioned to support this co-design process - many of the reforms’ implementation questions relate to how best to provide the types of support to participants that Uniting LAC has been providing as a matter of course for nearly five years.

Despite NDIA assurances to the contrary, reigning in expenditure under the Scheme appears to be a significant driver of the proposed reforms. Uniting understands that the NDIS must be sustainable and cost control is an important part of ensuring this. But budgetary costs are only a part of the picture. As the Productivity Commission Report explained, the NDIS would “generate substantial economic benefits” to Australia, and the net economic cost would thus be much lower than its budgetary cost. It highlighted a significant economic return on investment for the NDIS (combined with DSP reforms) – a one per cent increase in GDP by 2050 (p.941). Any decision about funding cuts and changes to Scheme eligibility and supports needs therefore to be informed by a rigorous and long-term cost benefit analysis and not by a knee-jerk response to current expenditure trends.

The NDIS has enjoyed bipartisan support since its inception, but Uniting is concerned that this has now changed. Without any real consultation with stakeholders and using only selected findings of the Tune Review and the Productivity Commission Report to justifying the changes, the Australian Government and the NDIA are unilaterally re-engineering the Scheme and doing away with some of the fundamental principles on which it was based. We urge them to reconsider this approach and to work with all interested parties to preserve the integrity of this world-leading service for people with disability.

Recommendations

1. To address the risks outlined in this submission, the NDIA should work with stakeholders to co- design the implementation processes for IAs.
2. Maintain Section 34 of the NDIS Act and preserve the centrality of participant goals and aspirations in the determination of reasonable and necessary supports.
3. Maintain transparency by ensuring that participants are given full access to all details of their IAs (including all inputs used in determining the assessment) and preserve their rights to challenge these assessments and funding decisions.

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4. Ensure that stakeholders have input into the design of IA performance measures and the quality assurance framework and ensure these are clear before the changes are implemented.
5. Conduct a comprehensive formative evaluation of the IA system during its initial implementation. This should be overseen by external stakeholders and focus on the fitness for purpose of the assessment tools (used individually and in combination), the experience of the full range of Scheme participants, observable improvements in participants’ access to the Scheme, as well as improvements in Scheme efficiency and cost-effectiveness. In consultation with stakeholders, make immediate adjustments to the implementation arrangements for IAs based on the findings of this formative evaluation.
6. Make clear the NDIA’s expectations on how many current participants will be found to be ineligible for the Scheme as a result of IAs and what arrangements will be put in place to support their transition out of the Scheme. To minimize the risk of the Independent Assessment process exacerbating workforce shortages, ensure that re-assessment of existing NDIS participants occurs at rate that can be realistically absorbed by local markets.
7. Make transparent the process for combining the outputs of separate assessment tools into an overall assessment result and provide evidence of the validity and accuracy of this process in determining reasonable and necessary supports.
8. Provide supports for people with disability, their families and/or carers to understand draft budgets and Independent Assessment Reports. Some participants may not have the capacity or informal support networks available to understand assessments if they are presented as reports sent in the mail.
9. Clarify how the assessment tools will be selected for each individual and how they will be used in a way that is appropriate to their individual circumstances and capacity.
10. Given the known engagement risks for vulnerable groups, it is vital that implementation of the new arrangements be closely monitored for such groups to ensure that the changes do not inadvertently lead to their disengagement. Communities/peak bodies need to be actively involved in developing local responses to mitigate this risk. It is vital that Independent Assessors understand that groundwork needs to be done to build the trust of these vulnerable groups – adopting a purely transactional approach to the conduct of the assessments is likely to fail.
11. Clarify the role of LACs under the new arrangements, especially their role in supporting prospective customers during the early stages of their service journey, if and how they will be involved in planning meetings, and any role they are expected to play in preparing people for Independent Assessments.

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