NDIA Accountability Project

Systemic policy analysis and advocacy for people living with disability and their families

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Purple Orange

Submission to the Joint Standing

Committee on the National Disability

Insurance Scheme

March 2021

About the Submitter

JFA Purple Orange is an independent, social-profit organisation that undertakes systemic policy analysis and advocacy across a range of issues affecting people living with disability and their families.

Our work is characterised by co-design and co-production and includes hosting several user- led initiatives.

Much of our work involves connecting people living with disability to good information and to each other. We also work extensively in multi-stakeholder consultation and collaboration, especially around policy and practice that helps ensure people living with disability are welcomed as valued members of the mainstream community.

Our work is informed by a model called Citizenhood.

© 2021 Julia Farr Association Inc. on the NDIS inquiry into Independent Assessments Page 2 of 28

Contents

  1. Summary and recommendations …………………………………………………………………………… 4
  2. Introduction ………………………………………………………………………………………………………… 6
  3. Our key point ………………………………………………………………………………………………………. 7
    • 3.1. Step 1: a simpler, accessible, assessment tool that gives a budget signal …………….. 7
    • 3.2. Step 2: detailed planning, where the participant chooses their planner ………………. 8
    • 3.3. Likely benefits of the two-step ‘assessment’ …………………………………………………… 10
  4. Context for assessment: Transactional and transformational benefits ……………………… 11
    • 4.1. Transactional benefits ………………………………………………………………………………….. 11
    • 4.2. Transformational benefits …………………………………………………………………………….. 11
  5. The link between assessment and evaluation ……………………………………………………….. 13
  6. The importance of codesign ………………………………………………………………………………… 14
  7. The quest to keep it simple …………………………………………………………………………………. 15
  8. Indicate – Negotiate – Evaluate ……………………………………………………………………………. 17
    • 8.1. Indicate ………………………………………………………………………………………………………. 18
    • 8.2. Negotiate ……………………………………………………………………………………………………. 18
    • 8.3. Evaluate ……………………………………………………………………………………………………… 18
  9. Miscellaneous points ………………………………………………………………………………………….. 19
    • 9.1. Participants deemed exempt from Independent Assessments ………………………….. 19
    • 9.2. Reassessment ……………………………………………………………………………………………… 20
    • 9.3. The skills and experience of assessors ……………………………………………………………. 20
    • 9.4. Troubling aspects of the proposed Independent Assessment …………………………… 21
    • 9.5. Reasonable and Necessary ……………………………………………………………………………. 21
  10. Conclusion ……………………………………………………………………………………………………… 22
  11. References …………………………………………………………………………………………………….. 23
  12. Appendix 1: a summary introduction to Citizenhood ………………………………………….. 24 on the NDIS inquiry into Independent Assessments Page 3 of 28

1. Summary and recommendations

We believe further work is needed on the proposed assessment arrangements at the NDIS, which we do not yet see as being sufficiently efficient and effective in their purpose, nor sufficiently coherent with Scheme values and outcomes.

The document includes several recommendations, also listed below for easy reference.

Recommendation 1

That the NDIS adopt a simpler assessment step sufficient to provide an indicative signal of a draft budget, along with a community-based planning step that delivers deeper insights to a participant’s circumstances

Recommendation 2

That the NDIS adopt an assessment and planning mechanism that meets the imperative to target both transactional and transformational benefits

Recommendation 3

That the NDIS assessment tools be such that they can also be used to evaluate outcomes, where that the elements of assessment closely match the elements of evaluation

Recommendation 4

That the NDIA install a codesign group including people living with a diversity of disability experience, to work with NDIA to advance the design of the Independent Assessment Process, especially to assess its goodness of fit with Scheme values such as control and choice and social and economic participation, process values such as accessible, holistic, dignified and strengths-based

Recommendation 5

That the NDIA adopt the process value of simplicity and include this value in its appraisal of proposed future assessment arrangements on the NDIS inquiry into Independent Assessments Page 4 of 28

Recommendation 6

That the NDIS approach to assessment is placed into the context of a Participant Pathway framework called Indicate-Negotiate-Evaluate

Recommendation 7

That the NDIA establish a continuous improvement methodology where it tests alternative assessment mechanisms with any Scheme applicants considered to be exempt from the main approach to assessment, especially with a focus on simplicity and goodness-of-fit, and where such alternatives prove effective to scale them up to the main population of Participants

Recommendation 8

That the NDIA establish a clear and well-publicised mechanism for reassessment that responds quickly when a Participant’s circumstances change, or have imminency of change

Recommendation 9

That the NDIA not set prerequisites for assessors, such as having a health qualification, that reinforce a clinical/medical model of disability support assessment

Recommendation 10

That the future assessment arrangements at the NDIS focus on mapping Participant circumstances in the context of an overall Scheme budget that properly contemplates the reasonable and necessary costs of lifting Participants into authentic, active, valued roles in mainstream community life on the NDIS inquiry into Independent Assessments Page 5 of 28

2. Introduction

We thank the Joint Standing Committee for the opportunity to make this submission.

As signalled by the following words appearing in various places in the agency’s discussion paper, we acknowledge and support the NDIA’s interest in designing an assessment process that is timely, responsive, with no cost burden to Scheme applicants, that is consistent, that maps a person’s circumstances sufficient to land a draft budget, that supports flexibility, and which upholds dignity and respect.

However, we think the current proposed arrangements are at risk of not achieving that, and being over-engineered and overly clinical. These factors, together with some communication misfires, have resulted in deep concern within the disability community which we understand and support.

We believe there should be an upfront mapping of a Scheme participant’s circumstances so that the participant can be given an early signal about their draft budget, so they can plan with some knowledge of the resources available. This is of critical importance if the Scheme is to fund tailored supports that deliver strong impact. Because of this we support the NDIA’s efforts to try and understand how best to give an early signal to participants about a budget. However, we do not believe it should be in the form of a complex assessment conducted by clinicians. We think that while the NDIA wants to rely on standardised testing as the cornerstone of its assessment, an equally important consideration is goodness of fit, and doing that in a simple a method as possible.

Based on our contemplation of these and related matters since 2006, including an examination of overseas jurisdictions operating individual budget arrangements that include an assessment step, our submission examines a range of issues we hope are of interest to the Committee. But if we were to take a reductionist approach, there is one key point we want to make in particular. on the NDIS inquiry into Independent Assessments Page 6 of 28

3. Our key point

The idea of an ‘assessment’ is to build a comprehensive view of someone’s circumstances so the Scheme can understand how best to assist. In other words, the ‘assessment’ is attempting to get to know the person and their unique situation. We believe this is not possible in any standardised ‘assessment’ process. The wide range of permutations affecting a person’s circumstances, together with the numerous variables that might impact the likelihood of safe and accurate disclosure by the participant about their circumstances, make a ‘comprehensive independent assessment’ unrealistic because we do not think it will reliably produce a complete and accurate map of the person’s situation. People are not robots, whose programming can be fully mapped using a standard tool.

The key insights about a person’s situation are more likely to be uncovered during the planning process, and where the person chooses their planner and the planning methodology. It is in a longer conversation with a trusted listener that an authentic portrait of a person’s situation can emerge.

Therefore, we believe the goal of ‘assessment’ is better accomplished in the following two steps.

3.1. Step 1: a simpler, accessible, assessment tool that gives a budget signal

This step asks sufficient questions to land a ‘ballpark’ estimate of the person’s NDIS budget. This is a signal, not a guarantee, but is sufficient to assist the person to plan. In some overseas jurisdictions we visited, this budget signal was accomplished using 10 questions.

We believe the NDIA is already undertaking important work in support of this. In trying to evolve ‘reference packages’ and ‘personas’, the agency is trying to understand what types of headline circumstances might provide signals about indicative budgets. If a short series of questions is developed that is sufficient to broadly align a participant with one or other of these personas, that will give a draft budget signal. on the NDIS inquiry into Independent Assessments Page 7 of 28

We think it is possible for the agency to examine all the questions currently contemplated within its suite of independent assessment tools, and to truncate them, especially those likely to have a high correlation with each other. For example, a detailed assessment tool might ask numerous questions to build a picture of how much help a person needs to physically navigate their day. These questions might examine the help someone needs to get out of bed, use the bathroom, dress, move through the house, prepare a meal, clean a surface, open a door, and so on. For any one person, these questions are likely to produce very similar responses. If someone needs little or no assistance to physically navigate their day, that will be reflected in each answer. If someone lives with quadriplegia and needs complete assistance, that too will be reflected in each answer. In which case, this raises the question about why one would ask more questions than are needed to give a general signal about someone’s circumstances, sufficient to set an indicative budget based on a match with a ‘persona’. As our agency saw in some overseas jurisdictions, sufficient information about physical capacity was gathered using just one question or two questions, using a Likert scale, with a weighted scoring system driven by actuarial data.

Based on this, we think the NDIA should be supported to continue and deepen its work on the development of personas, and to model how the large suite of questions within the current proposed Independent Assessment arrangements, can be distilled into a much smaller, more accessible suite of questions sufficient to provide a ballpark ‘draft budget based on the participant’s match with a persona.

3.2. Step 2: detailed planning, where the participant chooses their planner

In 2015, JFA Purple Orange prepared an advisory report to the NDIA on what makes a good plan. This work was codesigned by a group including people living with disability and family members, and involved a consultation with several hundred people living with disability and their supporters around Australia.

Among other insights, the report noted that good planning was associated with a planner that the person trusts, a methodology that the person understands and chooses, and in a timeframe that works for the person. However, these are not features of the current on the NDIS inquiry into Independent Assessments Page 8 of 28

arrangements in the NDIS. We believe they should be, if the NDIA is to achieve the insights that are ambitiously but unrealistically associated with the Independent Assessment proposals.

People have told us a better plan happens when they have the assistance of someone they trust, who has the time to listen and understand the person’s unfolding story, to then identify with the person the priority themes of interest or concern, to which resources and actions can then be assigned.

This planning process reveals a depth of detail of the person’s circumstances that an Independent Assessment is highly unlikely to reach, and it also produces a plan where the person has a greater sense of ownership and which delivers clear and relevant components to which the NDIS draft budget can be set against, refined where necessary, and signed off.

In overseas jurisdictions we visited who operated this type of arrangement, typically the planners were not employees of the agency. Instead, they were community-based people and agencies who had met accreditation requirements to be on a list of planners the person could choose from. The jurisdiction still employed planners of its own, available to participants who either wished to choose them or whose circumstances of vulnerability demanded a closer connection.

Therefore, we believe that for the NDIA to achieve a goal of a comprehensive understanding of each participant’s circumstances, it will need to rebuild its understanding of the planner role, and largely outsource it to the community, driven by quality standards and participant choice.

We think this is liberating for the NDIA, who currently are burdened with trying to achieve a nationwide team of planners who have insight into all aspects of disability circumstances, and who can undertake such planning within a specific timeframe. In the alternative scenario above, the NDIS is tapping the broader and deeper expertise that already exists in Australian communities. on the NDIS inquiry into Independent Assessments Page 9 of 28

With the NDIA retaining through its own personnel a firm hold on budget signals, accreditation of planners, and the final sign-off of plans, there is no reason to conclude that such outsourcing would result in a loss of control of quality or budget.

3.3. Likely benefits of the two-step ‘assessment’

Were the NDIA supported to evolve its assessment and planning arrangements to reflect the above two steps, we believe the following benefits are more likely to emerge:

  • An assessment tool that is less clinical and more accessible to the participant
  • An assessment tool that takes much less time to administer, and therefore costs less
  • Reduced anxiety among participants about the extent to which that assessment step produces an inflexible budget and plan
  • An assessment tool that lands sufficient information for the Scheme actuary to signal a draft budget and for the participant to be able to plan
  • A planning process that contributes to and completes the process of ‘assessment’, by delivering key insights to the person’s situation and priorities, in a way that builds participant ownership of the plan, leverages community expertise, and results in a highly tailored use of the subsequently signed-off budget
  • Together, an assessment and planning process that will position the NDIS to fund outcomes that are genuinely transformational in people’s lives

To assist the Committee’s consideration of that last point, the next section considers the outcomes or benefits the Scheme seeks to deliver, because an assessment process operates in that context.

Recommendation 1

That the NDIS adopt a simpler assessment step sufficient to provide an indicative signal of a draft budget, along with a community-based planning step that delivers deeper insights to a participant’s circumstances on the NDIS inquiry into Independent Assessments Page 10 of 28

4. Context for assessment: Transactional and transformational

benefits

JFA Purple Orange is committed to contributing to the success of the NDIS, to see it deliver on its promise to deliver control and choice to the disability community of Australia, and to support people living with disability into social and economic participation. As such, the Scheme can be seen to be measurable in terms of two types of benefit: transactional benefits and transformational benefits.

4.1. Transactional benefits

Applied to the NDIS (National Disability Insurance Scheme), transactional benefits refer to those types of benefits that are consumed in the moment but are likely to come round again because the person will need them again. If someone’s circumstances mean they need practical assistance with the typical activities of daily living, then the support they receive for this might be seen as bringing transactional benefits, and where the measures of success (i.e. the benefit was delivered) would be that the support could be relied upon to show up on time, to be tailored to the person’s preferences, was competent, dignified, and was done with kindness.

Typical measures of transactional benefits would be a count of the amount of timely and competent service that was provided to a Participant, and the extent to which the Participant was satisfied with it.

In the narrative leading to the NDIS, it was clear that there was variable access to service and supports, meaning many Australians living with disability were not able to access these transactional benefits. These benefits are critically important for many people living with disability to get on with their lives, but they were not the sole reason for the NDIS.

4.2. Transformational benefits

In the lead up to the National Disability Strategy and subsequently the NDIS, the Australian Government’s national consultation produced the Shut Out report1, which clearly set out

1 National People with Disabilities and Carers Council (Australia) & Australia. Department of Families, Housing, Community Services and Indigenous Affairs (2009). Shut out: the experience of people with disabilities and their families in Australia : National Disability Strategy consultation report. Dept. of Families, Housing, Community Services and Indigenous Affairs, [Canberra] on the NDIS inquiry into Independent Assessments Page 11 of 28

how people living with disability were not accessing the same opportunities for fellowship and belonging in our communities. Many people living with disability felt shut out from the ordinary valued life chances available to most Australians.

Therefore, the NDIS was expected to help change this, and the phrase ‘social and economic participation’ featured often in the Scheme’s narrative.

If a support has brought a transformational benefit, this means the support was delivered in a way that left the person’s life chances changed for the better. For simple example, a support worker preparing a meal for a person to eat might be seen to be delivering a transactional benefit. This is because the person will become hungry again in the future and will need meals prepared into the future. However, if the worker supports that person to learn the skill of cooking for themselves, this is a transformational benefit because the person’s capacity, and therefore life chances, has grown.

More compelling examples of the Shut Out imperative for the NDIS to deliver transformational benefits are:

  • Employment

    people living with significant disability are deeply under-represented in the mainstream workforce and economy. The benefits of authentic, award-waged employment are clear and extensive for any Australian. Wages bring disposable income, which funds our choices, which place us into a wide range of valued roles in our communities.

  • Belonging

    people living with significant disability are less likely to have active valued membership of mainstream community life, in significant part because traditionally people living with disability have been burdened with low expectations from others, seen as recipients not contributors, and have been separated off into separate facsimile lives marked by segregated houses, segregated education, segregated very- low-paid work, and so on. These are the very opposite of the rights-based inclusion that Australia has signed up for in the United Nations Convention on the Rights of Persons with Disabilities, and they need to be replaced by NDIS investments that see on the NDIS inquiry into Independent Assessments Page 12 of 28

people supported to take up authentic valued roles in mainstream community life. These represent the path to connection, fellowship and belonging, the opposite of segregation, isolation, and loneliness. Further background on how a service system might navigate transformational benefits is set out in Williams (2013) in the Model of Citizenhood Support2, where transformational benefits are examined using the lens of roles of Citizenhood and four types of asset-building (the Four Capitals) that can lead to it. Refer Appendix 1 for a summary. We signal this publication here because it includes a sample suite of questions for assessing a person’s circumstances that may assist the consideration of future assessment arrangements at the NDIS.

Recommendation 2

That the NDIS adopt an assessment and planning mechanism that meets the imperative to target both transactional and transformational benefits

The Scheme’s work must consistently be understood, and supporting process contemplated, in the context of the outcomes or benefits the Scheme hopes to deliver.

It seems compellingly intuitive that the questions one might ask to assess the size of an NDIS investment, would be the same questions one might ask to measure the impact of that investment.

Given the NDIS is delivering two types of impact – a transactional benefit, and a transformational benefit – this means the independent assessment might focus on the following:

  • Assessing transactional assistance

    Only asking sufficient questions to map the likely extent of need for transactional assistance. Accordingly, and as set out earlier in this submission, it may be unnecessary to ask a multitude of questions about the limits of a person’s physical

2 Williams, R. (2013), Model of Citizenhood Support: 2nd edition, Julia Farr Association Inc, Unley South Australia on the NDIS inquiry into Independent Assessments Page 13 of 28

capacity if answers to just one or two questions about this proves sufficient to signal the level of assistance necessary;

  • Assessing transformational assistance

    Spending time with the person to understand not just important binary issues like, ‘is this person in award waged mainstream employment or not’, but also to understand the extent to which the person’s current lifestyle brings them rich connection, fellowship, and valued membership of mainstream community life. This is very hard to assess in a single formal encounter, and requires time to get to know the person and their daily lifestyle

Therefore, instead of posing questions about for example the extent a Participant can climb a ladder (unless ladder-climbing is a mandated target outcome of the Scheme), we think it is possible to ask fewer and simpler questions that can then work as an evaluation outcome measure (Assessment question: how much assistance do you need to physically get through your day; evaluation question: did you get the assistance you needed to physically get through your day).

While we understand the NDIA sees a compelling case for operating standardised tools, if these tools do not by themselves have the best fit with what the Scheme is trying to deliver as outcomes, then we think the agency should rethink the assessment suite.

Recommendation 3

That the NDIS assessment tools be such that they can also be used to evaluate outcomes, where that the elements of assessment closely match the elements of evaluation

6. The importance of codesign

Codesign refers to a process where the intended beneficiaries of a design are involved in the development and decisions about that design. The NDIA appears interested and supportive of the benefits and features of codesign.

The assessment process is a key part of the Scheme pathway, and so is worthy of authentic codesign. After all, the NDIS is a key part of Australia’s investment in its society and on the NDIS inquiry into Independent Assessments Page 14 of 28

economy. It carries the mandate to materially impact the support arrangements for half a million Australians and their families. Central to this work is the efficiency and effectiveness with which each Participant navigates the NDIS pathway. The assessment step is part of that pathway, so the question is whether the future arrangements for assessment are efficient and effective. Codesign brings a highly valuable lens to this question.

In terms of efficiency, the NDIA reaches for words like accessible, consistent, objective, dignified, and fair. Thinking about the NDIA’s interest in codesign, and thinking about the concerns we have heard voiced since the release of the Independent Assessment consultation paper, we recommend the NDIA run a codesign process involving people living with disability, to properly examine whether the proposed Independent Assessment arrangements deliver on these iterated values, and especially the extent they are authentically accessible and authentically dignified.

The codesign group could work with NDIA to advance the design of the Independent Assessment Process, especially to assess its goodness of fit with Scheme values such as control and choice and social and economic participation, process values such as accessible, holistic, dignified and strengths-based.

Recommendation 4

That the NDIA install a codesign group including people living with a diversity of disability experience, to work with NDIA to advance the design of the Independent Assessment Process, especially to assess its goodness of fit with Scheme values such as control and choice and social and economic participation, process values such as accessible, holistic, dignified and strengths-based

7. The quest to keep it simple

We assert that simple should be added to the list of values against which the any Independent Assessment arrangements are tested. No assessment mechanism is perfect, because for example the NDIS is serving half a million people across a range of diverse circumstances. It is an impossible task for the NDIA to build a perfect and complete picture on the NDIS inquiry into Independent Assessments Page 15 of 28

of a person’s circumstances, not just because of the limits on resources the agency has available, but also because of the true magnitude of the task.

Because of this, the focus logically shifts to the question of what assessment process is good enough, where it has a goodness-of-fit with what the agency needs to know to assign an indicative budget that is relevant, fair, and consistent.

Drawing on past conversations that Purple Orange has had with overseas jurisdictions, and as outlined earlier in this submission, we believe it is possible to resolve an assessment process that is good enough to provide the information the agency needs, and which is simpler than the proposed Independent Assessment arrangements.

The issue is how much information is enough to land a consistent, fair, ‘ballpark’ indicative budget that can assist someone build a plan. Our view is the assessment tool needs to be sufficient to place someone within a budget range. This is based on the sentiment of the notional 80:20 rule, where if you can 80% of the way with 20% effort, is it worth then expending a further 80% of effort to try and land the remaining 20%, especially when there is a reasonable prospect of that information being discovered as part of the subsequent planning process.

This means that those more time-consuming aspects of the proposed Independent Assessment process that really need time for the assessor to properly get to know the person, can be shifted to the planning step, where the Participant chooses who to help them build their plan. This is the right place to chart the more detailed nuances of a person’s situation and priorities, and creates the opportunity to simplify the assessment process accordingly.

This draft plan can then be used to refine the budget based on how the planning process has revealed supplementary info about the person’s circumstances and priorities the assessment process will likely miss (because it is not a perfect system). on the NDIS inquiry into Independent Assessments Page 16 of 28

Also, the NDIA’s aspiration that the proposed independent assessment process is accessible, holistic, and strengths-based, is at risk of being at odds with a 3-4hr technical assessment process conducted by a stranger. The goals of holistic and strengths-based are not likely to be well-served by the proposed process. Their place is in the planning process, where there can be a much deeper holistic and strengths-based exploration of the person’s circumstances and preferences, and using a planning methodology that is authentically accessible to the person. The assessment might better be served by values like ‘simple’ and ‘relevant’.

During what might be regarded as the relative heyday of the UK’s work on personal budgets for people needing social care, there were plenty of examples of local jurisdictions using a simpler instrument, conducted by the local authority delegate, that used as few as ten questions to gather sufficient information about a person’s situation to signal an indicative budget. We were advised this typically took less than an hour and was less intrusive. A ‘Resource Allocation System’ (RAS), derived using actuarial disciplines, served as the framework to translate the scores from the simple assessment tool into an indicative budget. It was not a given that the delegate had to be a trained health professional. What was more important was that they understood the social care scheme and its parameters, and had been trained to administer a tool that was largely non-clinical in its style and substance.

Recommendation 5

That the NDIA adopt the process value of simplicity and include this value in its appraisal of proposed future assessment arrangements

8. Indicate – Negotiate – Evaluate

Mindful of the points we have made elsewhere in this submission, we believe there is a material risk that the proposed Independent Assessment framework is over-engineered. It includes relatively complex assessment tools, and which are expensive to administer because of the cost of the health professionals running them. on the NDIS inquiry into Independent Assessments Page 17 of 28

We would like to propose a conceptual framework for the Participant Pathway, based on the following which would characterise the role of the Delegate:

Indicate | Negotiate | Evaluate

8.1. Indicate

To support the accessibility and simplicity of the Participant Pathway, and as argued elsewhere in this submission, we assert that the NDIA selects tools that gather information from the applicant/Participant that is relevant to the Scheme’s intended outcomes, and sufficient to provide a signal about an indicative budget. The Delegate does not need to be an expert on disability, nor a health professional, they need to be an expert on the Scheme and its parameters, because they are in effect acting as agents of the actuarial model driving the Scheme, and the underlying insurance principles.

Having been given an indicative budget, the Participant can then build a plan for how they wish to apply the budget, and can choose someone they trust to assist this. We have outlined earlier in this submission how planning can happen in a way that leverages community-based expertise and is based on Participant choice.

8.2. Negotiate

Once the Participant has a draft plan, they meet again with the Delegate to discuss the draft plan. Again, mindful of the Scheme’s parameters, the Delegate tests the draft plan for markers such as relevance, impact, affordability, and if the indicative budget is too high, too low, or just right, for the plan. We have termed this step ‘Negotiate’ because the Delegate is negotiating the extent to which the Scheme can assist the Participant’s needs and preferences.

8.3. Evaluate

Once the plan and associated budget are confirmed, the Participant can then mobilise the arrangements, with whatever material assistance might be available, such as Plan Management, Support Coordination, etc. on the NDIS inquiry into Independent Assessments Page 18 of 28

Down the track, the Delegate meets with the Participant to assess the impact of the investment (the budgeted plan). The evaluation questions and assessment questions need to be very similar. This encounter not only serves to deliver the NDIA important information about the extent of transactional and transformational benefits that have been delivered for the Participant, but the same questions also serve as an updated assessment of what the person now needs.

We believe this framework provides clarity around the role of the Delegate, sets the scene for a simpler more accessible pathway, frames the assessment process in the context of outcomes, and frees up Scheme resources away from assessment and pathway administration so these can be invested in people having a choice of planners and community connectors (LACs).

Recommendation 6

That the NDIS approach to assessment is placed into the context of a Participant Pathway framework called Indicate-Negotiate-Evaluate

By taking this approach the NDIA could undertake a repositioning of roles across the agency, to reflect the role of the Delegate as the Scheme’s agent and frontline custodian of the insurance-based actuarial model underpinning it.

Our 2017 paper models this repositioning. While it was written for what the NDIA looked like in 2017, we believe the analysis remains relevant and is worthy of consideration. It could release a significant volume of resource for community-based planning, which in turn could strengthen the relevance and potency of the plans the NDIA is then considering.3

9. Miscellaneous points

9.1. Participants deemed exempt from Independent Assessments

The exemptions from Independent Assessments will be important to monitor, because they represent a group where the NDIA can continue to test alternative assessment

3 Williams, R. (2017). Keeping the Promise: rethinking the roles of planner and LAC in the NDIS. Adelaide: Julia Farr association Inc. on the NDIS inquiry into Independent Assessments Page 19 of 28

methodologies that might bring efficiency and effectiveness dividends for the entire Scheme population.

Recommendation 7

That the NDIA establish a continuous improvement methodology where it tests alternative assessment mechanisms with any Scheme applicants considered to be exempt from the main approach to assessment, especially with a focus on simplicity and goodness-of-fit, and where such alternatives prove effective to scale them up to the main population of Participants

9.2. Reassessment

Reassessment is important because people’s circumstances can change. Therefore, we recommend a clear and well-publicised mechanism for reassessment that responds quickly when a Participant’s circumstances change or have imminency of change.

Recommendation 8

That the NDIA establish a clear and well-publicised mechanism for reassessment that responds quickly when a Participant’s circumstances change, or have imminency of change

9.3. The skills and experience of assessors

Qualified health professionals are not going to be equally skilled in test administration (an Occupational Therapist is not necessarily any more skilled than a community worker in running an assessment tool usually run by a psychologist).

Qualified health professionals are not, by sole virtue of their professional training, going to be optimally positioned to undertake a comprehensive mapping of a person’s circumstances, and serves to re-anchor the Scheme within an impairment/medical model.

Assessors should be specifically trained to undertake the selected tools, and not exclusively drawn from the health sector. on the NDIS inquiry into Independent Assessments Page 20 of 28

Recommendation 9

That the NDIA not set prerequisites for assessors, such as having a health qualification, that reinforce a clinical/medical model of disability support assessment

9.4. Troubling aspects of the proposed Independent Assessment

The challenge with running standardised tools is that they do not always represent an optimal goodness-of-fit with what the Scheme needs to know. This means the NDIA might be asking questions that in terms of the Scheme’s decision-making are unnecessary, but which are asked because they are part of the standardised too.

We do not think is helpful to Participants, especially if such questions reflect a clinical line of enquiry that inadvertently speaks to a medical model of disability.

We are also concerned about aspects of the proposed Independent Assessment that may call upon the Participant to be observed by a stranger as they undertake a daily living task. This is quite an artificial scenario and therefore problematic in its capacity to accurately reveal the extent of a person’s capacity.

Similarly, we are concerned about aspects of the proposed Independent Assessment that include questions that lean towards binary responses that miss a range of detail and nuances.

We believe the recommendations set out in this submission can reduce the above risks.

9.5. Reasonable and Necessary

The NDIS aims to life people living with disability into the life chances available to most Australians. This is the context for determining through an assessment and planning process the degree of reasonable and necessary supports a Participant requires.

We support the NDIA’s enthusiasm for flexibility in budgets based on an upfront amento, and we recognise the concern an NDIS budget should not be seen as general income. But reasonable and necessary needs to be understood in the context of the on the NDIS inquiry into Independent Assessments Page 21 of 28

Scheme’s implied commitment to choice and inclusion; the focus must remain on advancing the person’s wellbeing and their membership of mainstream community life.

As such, caution must be used when considering how to describe ‘reasonable and necessary’ in any assessment process, and should be placed in the context of what is reasonable for most people. Therefore, we recommend that in the NDIS assessment and planning steps, reasonable and necessary is understood in the context of (1) what the person reasonably and necessarily needs to navigate daily living and wellbeing, and (2) the life chances that are available to most Australians.

This means there needs to be a clear and explicit provision within the overall NDIS financial modelling, and therefore in the forward estimates, that Participant assessments do not operate in the context that those Participants with higher support needs will be served in more congregate arrangements such as group homes and group day programs, because somehow the alternative individualised supports are deemed prohibitively expensive.

It is vital the NDIS deliver authentic transformational outcomes in people’s lives, where people are lifted into active valued membership of mainstream community life. This does not happen in congregate services, and the NDIS overall budget should not be modelled on any assumption that it does. Otherwise, the assessment process, constrained by such budgetary assumptions, will not set the scene for transformational benefits to emerge.

Recommendation 10

That the future assessment arrangements at the NDIS focus on mapping Participant circumstances in the context of an overall Scheme budget that properly contemplates the reasonable and necessary costs of lifting Participants into authentic, active, valued roles in mainstream community life

10. Conclusion

We thank the Committee for the opportunity to make this submission, and we request the opportunity to meet with the Committee to further discuss the contents of this submission. on the NDIS inquiry into Independent Assessments Page 22 of 28

11. References

National People with Disabilities and Carers Council (Australia) (2009). Shut out: the experience of people with disabilities and their families in Australia: National Disability Strategy consultation report. Dept. of Families, Housing, Community Services and Indigenous Affairs, [Canberra]

Williams, R. (2013), Model of Citizenhood Support: 2nd edition, Julia Farr Association Inc, Unley South Australia

Williams, R. (2017). Keeping the Promise: rethinking the roles of planner and LAC in the NDIS. Adelaide: Julia Farr association Inc. on the NDIS inquiry into Independent Assessments Page 23 of 28

  1. Appendix 1: a summary introduction to Citizenhood

A copy of the complete publication is available at our website. Here follows some summary

elements.

Defining Citizenhood

Citizenhood describes a situation where a person is an active and valued member of their local community. Their lifestyle is informed by personally defined choices and they can grow through their involvement in meaningful activities and by their participation in a network of relationships characterised by acceptance, belonging and love. Citizenhood comprises roles that are valued by our communities; family member, friend, neighbour, worker, club member, customer, etc. A summary of the Citizenhood concept, and the associated imperative for people living with disability, is outlined in this short animated media clip.

Citizenhood is dynamic in that it can rise or fall depending on a person’s specific circumstances. For example, a person living with autism who is excluded from the educational and social benefits of mainstream schooling is at risk of having their Citizenhood diminished because of insufficient access to valued roles in mainstream community life, in this case the valued role of being a mainstream student.

The concept of Citizenhood is not to be confused with the concept of Citizenship, which is a much narrower construct typically referring to membership of a country.

The Model of Citizenhood Support is a framework for determining what kind of assistance might be most helpful to a person in circumstances where there are perceived disadvantages such as physical or mental impairment or a lifestyle characterised by a relative poverty of resources and opportunities. By examining how a person can call upon their four key areas of Capital (Personal Capital, Knowledge Capital, Material Capital, and Social Capital), it is possible to determine how a person’s life chances will enable them to live a good life through exercising life choices.

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The Four Capitals

The Model of Citizenhood Support asserts the relative success or failure of systems of personal support in advancing people’s life chances can be linked to the degree of attention given to four main elements, called Capitals:

  • Personal Capital (perspective)
  • Knowledge Capital (information and skills)
  • Material Capital (tangible physical resource)
  • Social Capital (connection with other people)

Personal Capital

For a person to advance their chances of living a good life it is important for them to have a sense of who they are, their worth and the vision or dream they are moving towards. There are six important elements of Personal Capital a person may draw upon to advance or uphold a good life: potential, strengths, self-worth, vision, control, and confidence.

People may vary in the degree to which they see the inherent worth in themselves, their capacity to take up a life of active Citizenhood, and what that might look like. The degree to which we give ourselves permission to do these things may depend on the life experiences we have had. These life experiences will often involve how other members of society perceive us and interact with us.

Knowledge Capital

Each individual has a personal store of information and skill which we use to make decisions and take actions. This information also helps us to understand and describe our potential, grow our capacity, and exercise personal agency. In the Model of Citizenhood Support, this store of information and skill is known as Knowledge Capital.

Knowledge Capital has two important considerations: how we make the best use of what we know and can do, and how we acquire new knowledge and skill. For people living with

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increased vulnerability, issues with access to information, and filters applied to information before it is received by the person, can impede that person’s Knowledge Capital.

Material Capital

The Model of Citizenhood Support asserts two main types of Material Capital: Personal Material Capital and Public Material Capital, and both need to be addressed to advance a person’s life changes towards a good life.

Personal Material Capital is the tangible assets owned or controlled by a person themselves, such as money, housing, and personal effects. Public Material Capital are tangible assets within our communities, both publicly and privately owned, which are available for the broader population to use. Examples of Public Material Capital include public transportation, shopping malls, telecommunication networks and outdoor spaces like the beach. These assets are instrumental in a life of active Citizenhood as they are typically the platform for a person to connect with others.

Personal Material Capital

Where a person experiences low Personal Material Capital, otherwise known as poverty, this typically translates to poor or no housing, difficulties with costs of food and utilities, and less involvement in community life because of the difficulties meeting the costs of public transportation, entertainment and so on. The experience of poverty dramatically reduces the range of choices available to a person, because many choices in life are dependent on people having money. Fewer choices mean fewer opportunities, and few opportunities means less Citizenhood.

Low Personal Material Capital makes it harder for a person to access Public Material Capital; it is much harder to get to the beach, the shopping mall, or the concert if you cannot afford the bus fare to get there. People can experience difficulties accessing Public Material Capital separate from financial means, particularly where these assets are not accessible. For example, a person living with autism or their family member may find noisy, bright, and busy supermarkets inaccessible due to the sensory challenges they pose. If in its design the bulk of Public Material Capital is inaccessible to sections of the community, many of those

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people will be less able to engage in community life on the same basis as others, and this cuts people off from an almost incalculable range of possibilities – for growth, for work, for love, for belonging.

People need to be able to access Material Capital in support of active Citizenhood. This includes maintaining current Material Capital and growing Material Capital. If a person needs assistance because of increased vulnerability, the formal agency (or individual agent) has a fundamental obligation to uphold that person’s Material Capital. This means the agency must carry out its endeavours in ways which help maintain, and do not inadvertently undermine, the person’s ownership or control of personal material resources, or the person’s access to publicly availably amenities.

To achieve this, the agency must provide assistance in a way that demonstrates they respect and show care for that person’s belongings. They must also take care to avoid practices which diminish a person’s access to mainstream Public Material Capital and instead should assist a person to take advantage of this capital. A powerful example of this is the creation of ‘special’ services for people living with disability, such as segregated schools and workplaces. While often well-intentioned, the creation of ‘special’ settings for people living with disability mean this part of our population are less visible to the broader community which could lead to some people believing that public amenities and other mainstream community resources are not suitable for people living with disability.

Meaningful paid work

For a person to advance their Personal Material Capital, two elements are required: finding meaningful paid work and creating personalised budgets. Earning a living wage is the primary way most people maintain and grow their Material Capital; therefore, meaningful paid employment is a powerful way to advance a person into a life of active Citizenhood.

Social Capital

The nature and extent of our connectivity to other people represents Social Capital, and is an asset that can be used to advance a person’s life chances. The Model of Citizenhood Support proposes two main aspects of Social Capital: Connection and Fellowship.

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Connection refers to the transactions that happen between people. Fellowship on the other hand refers to the depth of those transactions. Fellowship can range in depth from the pleasant familiarity of chatting to the same checkout operator during our weekly shop, or a regular cuppa with the neighbours, acquaintanceships, friendships, and close relationships. But none of these fellowships can grow or be sustained without the initial and subsequent connections shared by the people involved. Social Capital can be low if the person has few connections and relationships. The consequence of low Social Capital is isolation and loneliness.

Unfortunately for many people living with increased vulnerability, daily life is characterised by the receipt of services and not much else; as though the goal of service delivery seems to be to get people clean, dressed, fed, moved, and “therapied” with the rest of the time being “filler”. In this way, people are at risk of being trained to see their life goals in terms of service recipiency rather than growing social networks.

The Model of Citizenhood Support asserts that where a person lives with increased vulnerability it may be more difficult for them to move into opportunities that build connection, which has an impact on their Social Capital. A typical system response to this has been to set up special opportunities or services for the person, albeit with hopefully good intentions. However, these special opportunities typically involve grouping people living with disability, or where one-on-one support is dominated by the worker being the main conversation holder with community members. The result of these sincere but misjudged efforts is that the person’s Social capital is not grown, and is often actually diminished. By their nature, special services present narrower opportunities to access and build ordinary social connections. This inhibits the advancement of the person’s Social Capital, giving rise to the need for more special services. This becomes a vicious circle, where a person with lower capacity to build social connections is referred to special services, whose efforts only serve to make the issue entrenched, which in turn results in more special services.

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