Submission to NDIS Joint Standing Committee about general issues around the implementation and
October 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 a number of 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.
JFA Purple Orange 104 Greenhill Road Unley SA 5061 AUSTRALIA
Telephone: + 61 (8) 8373 8333 Email: admin@purpleorange.org.au Website: www.purpleorange.org.au Facebook: www.facebook.com/jfapurpleorange
Contributors
Ellen Fraser-Barbour Mikaila Crotty Cathy Cochrane Robbi Williams
Acknowledgments
We extend our gratitude to the people who joined the online and face-to-face consultation focus groups and shared their experiences, views, and recommendations.
© October 2021 Julia Farr Association Inc.
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JFA Purple Orange Submission on general issues around the implementation and performance of the NDIS
Contents
- Summary and recommendations …………………………………………………………………………… 4
- Introduction ………………………………………………………………………………………………………… 6
- Issues when applying to be a Participant: Who is in and who is out? …………………………. 6
- 2.1. People with intersectional disadvantage ……………………………………………………………… 7
- 2.2 Overlap between disability and chronic illness ………………………………………………………. 7
- The planning process ……………………………………………………………………………………………. 8
- 3.1 The components of a good plan…………………………………………………………………………. 12
- 3.2 Building transformational benefits into the planning process ……………………………….. 14
- The promise of ‘choice and control’ not seen in practice ………………………………………… 18
- 4.1 Understanding the criteria and rules within NDIS ………………………………………………… 19
- 4.2 NDIS language and terminology ……………………………………………………………………… 20
- 4.3 Flow of information between participant, LAC and NDIA Planners ………………………… 21
- Need for formal advocacy …………………………………………………………………………………… 22
- Co-design central to design and implementation of the NDIS ………………………………….. 23
- Conclusion ………………………………………………………………………………………………….. 25
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JFA Purple Orange Submission on general issues around the implementation and performance of the NDIS
1. Summary and recommendations
While the NDIS has improved flexibility and choice and control for many, there have also been wide-ranging issues and challenges which continue and need to be addressed. This submission has been prepared through our work over the years with systemic advocacy, peer networks and some recent targeted consultations with NDIS participants.
This submission considers a range of issues within the Scheme and offers the following recommendations:
Recommendation 1: That those who need more intensive one-to-one support to submit applications for access to the NDIS are provided with this support through a strengthened LAC approach
Recommendation 2: That the NDIA set its understanding of individual planning into the context of a Participant Pathway framework called Indicate-Negotiate-Evaluate
Recommendation 3: That the NDIA restructure its approach so that the planning role is commissioned from outside the agency and not via large scale purchasing of LAC services; this is more consistent with the value proposition of control and choice, and will give rise to plans that are likely to be more personalised and impactful
Recommendation 4: That the NDIA adopt a planning framework that draws on the findings of an extensive consultation conducted in 2015 across Australia, where over 600 respondents from the disability community placed emphasis on, inter alia, being able to plan using a timeframe that suited them, in a format that suited them, and with a planner that suited them
Recommendation 5: That the NDIA consider using the Model of Citizenhood Support as a conceptual framework for framing the planning process
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JFA Purple Orange Submission on general issues around the implementation and performance of the NDIS
Recommendation 6: That the NDIA adopt a planning framework that focuses on transactional and transformational benefits, that places the Participant as the author with assistance from a community-based Planner, and with the NDIA Delegate evaluating the potential effectiveness of a draft plan by looking for a ‘golden thread’
Recommendation 7: That the NDIA streamline information gathering and improve pathways for information and evidence transfer that can be useful in building the case for access in applications for both the NDIS and other systems such as Centrelink where possible (ie DSP, Carers allowance)
Recommendation 8: That the NDIA enable people living with disability to choose their LAC
Recommendation 9: That the NDIA invest and develop a more robust LAC model and address the high turnover rate of LAC staff to increase participant satisfaction
Recommendation 10: That the NDIA undertake some mapping work to become better informed of how funding for advocacy varies depending on state and territory investment and prioritise building relationships with various jurisdictions
Recommendation 11: That the NDIA commits to a genuine co-design approach for all aspects of Scheme development and adopts a plan for implementing this approach in a manner that ensures the co-design process maintains a high representation of people living with disability including people from demographics that are often the least likely to be heard
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JFA Purple Orange Submission on general issues around the implementation and performance of the NDIS
2. Introduction
The National Disability Insurance Scheme (NDIS) has changed how disability specific supports are funded with the introduction of individualised budgets rather than block funding services. This has increased the marketisation of disability service supports as commodities for NDIS participants to purchase with the idea that people will have greater choice and control and access to services they need to live valued lives. While the NDIS has improved flexibility and choice and control for many, there have also been wide-ranging issues and challenges which continue and need to be addressed.
JFA Purple Orange is well placed to provide recommendations given that we are working closely with people living with disability and other stakeholders in several ways. We have a number of people living with disability on our staff, and we operate with the value of co-design as central to all aspects of our work. We undertook two targeted focus groups (one online and one in-person) specifically in relation to this submission. We also have previously conducted surveys and focus groups on a range of topics including several which were relevant to previous NDIA or DSS consultations.
3. Issues when applying to be a Participant: Who is in and who is out?
The thought of applying to access the NDIS as a person living with a disability often instils anxiety and fear – particularly for those who have experiences negotiating bureaucratic systems and have had applications rejected previously (not just within the NDIS, but also from Centrelink, WorkCover, Medicare and other systems). The process of compiling the evidence from GPs, specialists and allied health professionals comes at a cost emotionally, physically and financially. These stresses are compounded when there are multiple professionals involved, particularly when people have overlapping disability and chronic physical or psychiatric illness.
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JFA Purple Orange Submission on general issues around the implementation and performance of the NDIS
We heard during our consultations about people living with disability finding it difficult to do the application to enter the scheme. People living with disability may be living in difficult circumstances and need direct support to do the application and coordinate evidence. We heard that intersectional disadvantage (and issues such as domestic and family violence or substance misuse, to name a few) and disability and chronic illness made entering the scheme particularly challenging.
2.1. People with intersectional disadvantage
People may be dealing with a range of situations compounding the barriers to accessing and utilising the NDIS. We heard that negotiating NDIS applications and reviews requires a great deal of time, resources and money. For example, one person reported to us that for many years they were subject to domestic violence and had no links to services or support. Individuals or families may be finding life hard due to a range of factors. People who are dealing with social factors that intersect and compound need assistance to put together an application and coordinate the evidence needed. There should be a primary point of contact and referral to an agency, such as the Local Area Coordinator (LAC), who assists with the first step of compiling the evidence and putting in an application.
2.2 Overlap between disability and chronic illness
We heard that the application process depends heavily on judgments of what constitutes a chronic illness and what constitutes ‘disability’. This distinction remains very unclear for the purposes of assessing functional capacity and accessing NDIS funds. We heard that people with multiple disability overlapping with chronic illness are more likely to be rejected by the scheme with very little information to follow up on. People found the process of proving their disability to be highly stressful and often they were in situations where they were unable to get access to basic needs such as showering. When the NDIS rejects an application or denies supports that have been asked for people fell demoralised. As one person living with disability said to us:
“I wouldn’t be surprised if it is at least present in other chronic illness groups, that people say “I don’t think I have the health to apply”. They’re like ‘I can’t take it physically, but I also can’t take it mental health wise. I can’t handle being told I am
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JFA Purple Orange Submission on general issues around the implementation and performance of the NDIS
not good enough.’ I basically don’t deserve the help because that is what a rejection means.”
People with long-term chronic illness who previously received support from block-funded disability services found that their subsidised support ceased as the agency rolled over to the NDIS. Some may transition to the NDIS, others may transition as ‘underage’ to My Aged Care with a two-year waiting list for support. The roll over to the NDIS has had a significant impact which continues to have a detrimental effect on those who did not qualify for NIDS and have had their supports taken away. Some with co-occurring chronic illness and disability are homebound or bedridden; this means that all contact is via phone or the internet.
Further to this, we suggest that the NDIA should allow people to be referred (or self-refer) to an LAC when people need support and assistance with submitting an application to the NDIA. This will reduce the fatigue and burden on participants who are surviving day-to-day and negotiating a range of stresses and traumatic life circumstances.
Recommendation 1: That those who need more intensive one-to-one support to submit applications for access to the NDIS are provided with this support through a strengthened LAC approach
4. The planning process
The Shut Out1 report clearly illustrated the imperative for people living with disability to have a fair go at what life has to offer. The NDIS constitutes only part of this, largely focusing on the availability of a personalised budget for formal supports for eligible people.
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
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JFA Purple Orange Submission on general issues around the implementation and performance of the NDIS
As such, for the individual participant the NDIS personal budget is a specific arrangement that needs to be contextualised by the broader issues and priorities that person has.
Because of this, the participant’s NDIS plan, which sets out how the personalised budget will be applied, must take place within a broader plan that is developed and owned by the person.
However, based on how the proposed planning arrangements are described in an NDIA paper2 , it appears the NDIA is proposing the plan is primarily driven by the results of an Independent Assessment, in some future form. If so, we consider this an error. An Independent Assessment should give rise to an indicative budget and with the proposed clarity about which parts are flexible and which parts are fixed. This does not constitute a draft plan. So, as used in the NDIA’s consultation paper, the term ‘draft plan’ is misleading, because it suggests the results of independent assessment, and the Delegates’ interpretation of those results, determines both the budget and the plan contents.
The NDIS investment is intended to sit in the context of the participant’s broader life chances. As such, the ‘plan’ should be developed and owned by the participant, and to which the personalised budget is then applied. Otherwise, the plan is a derivate, an artifact of the assessment and budget, and unwittingly conveys the impression that the Independent Assessment, involving standardised instruments administered by a person who does not know the participant, will be the primary means by which the participant’s future is cast.
We would like to propose a conceptual framework for the Participant Pathway, based on the following which would characterise the role of the Delegate:
their families in Australia : National Disability Strategy consultation report. Dept. of Families, Housing, Community Services and Indigenous Affairs, [Canberra]
2 NDIA (2020) Consultation paper: NDIS Planning Policy for Personalised Budgets and Plan Flexibility
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JFA Purple Orange Submission on general issues around the implementation and performance of the NDIS
Indicate | Negotiate | Evaluate
Indicate
To support the accessibility and simplicity of the Participant Pathway, 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.
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.
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.
Down the track, the Delegate meets with the Participant to assess the impact of the investment (the agreed budgeted plan). The evaluation questions and assessment questions need to be very similar. This encounter not only serves to deliver the NDIA important
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JFA Purple Orange Submission on general issues around the implementation and performance of the NDIS
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, and sets the scene for the Participant to work on an updated plan that contemplates fresh priorities.
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 from assessment and pathway administration so these can be invested in people having a choice of planners and community connectors (LACs).
Recommendation 2: That the NDIA set its understanding of individual planning 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 resources for community-based planning, which in turn could strengthen the relevance and potency of the plans the NDIA is then considering.3
We consider the document to be sufficiently relevant to the NDIA’s considerations of future planning arrangements, that we submit it in its entirety as part of our submission, as
3 Williams, R. (2017). Keeping the Promise: rethinking the roles of planner and LAC in the NDIS. Adelaide: Julia Farr Association Inc.
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JFA Purple Orange Submission on general issues around the implementation and performance of the NDIS
Appendix 1. In particular, it provides a rationale for the NDIA to restructure its approach so that the planning role is commissioned from outside the agency and not via large scale purchasing of LAC services; this is more coherent and consistent with the value proposition of control and choice, and will give rise to plans that are likely to be more personalised and impactful.
Recommendation 3 That the NDIA restructure its approach so that the planning role is commissioned from outside the agency and not via large scale purchasing of LAC services; this is more consistent with the value proposition of control and choice, and will give rise to plans that are likely to be more personalised and impactful
3.1 The components of a good plan
Undoubtedly, the NDIA will want to see Participant plans that are tailored to the person’s circumstances and which advance the person’s wellbeing and life chances. Undoubtedly, Participants will also hope to see this in their plans.
This raises the question about what type of planning process will best deliver this. We contend that the proposed planning process, where the draft plan appears to be largely a derivative of an Independent Assessment, will not deliver this.
Instead, we refer the NDIA to a 2015 document it commissioned, that examined what people wanted from planning. It was called ‘pre-planning’, and related to the preparatory planning work a person might do before they meet with the Delegate to make the actual plan.
As we have said elsewhere, ‘pre-planning’ is the real planning work, and the ‘planning meeting with the Delegate’ should really be seen as a discussion to see how the NDIS budget can best be applied to the person’s plan.
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JFA Purple Orange Submission on general issues around the implementation and performance of the NDIS
The 2015 document4 was developed as part of an NDIS-funded project known as the DSO initiative that involved more than 20 community agencies around Australia who were developing local peer networks. The initiative provided a hub for peer networks and related activities, including a regional community-of-practice model and a ‘creative commons’ content-rich website
The NDIA asked Purple Orange, who were hosting the communities-of-practice and the peerconnect resources, to develop an advisory report to the NDIA on what makes a good plan.
Based on a co-designed approach, a consultation was undertaken involving several hundred voices from the disability community across Australia. The consultation brought rich insights into what people living with disability considered was essential for a good plan. We think it will profit the NDIA to understand these and to build them into the future arrangements for individual planning with the NDIS.
Drawing on the narrative of over 600 respondents, the document has so many recommendations directly relevant to the question of individual planning in the NDIS that we cannot hope to do them justice by attempting to paraphrase them here. We consider the document to be so important to the NDIA’s considerations of future planning arrangements, that we submit it in its entirety as part of our submission, as Appendix 2.
As a sample of its highlights, we note the importance the respondents placed on being able to plan using a timeframe that suited them, in a format that suited them, and with a planner that suited them. This seems to fit well with the value of control and choice. However, the
4 JFA Purple Orange (2015) DSO Pre-planning Report - Strategic Advice to the National Disability Insurance Agency (NDIA)
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JFA Purple Orange Submission on general issues around the implementation and performance of the NDIS
NDIA’s current practice does not offer any of these process features, and various proposed future arrangements have not offered these features either.
Recommendation 4: That the NDIA adopt a planning framework that draws on the findings of an extensive consultation conducted in 2015 across Australia, where over 600 respondents from the disability community placed emphasis on, inter alia, being able to plan using a timeframe that suited them, in a format that suited them, and with a planner that suited them
3.2 Building transformational benefits into the planning process
The NDIS needs to deliver outcomes that lift the Participant into what the NDIA and its stakeholders have often referred to as ‘social and economic participation’. This means an NDIS plan needs to focus on how the NDIS personalised budget (its investment in the Participant) will be used to deliver social and economic participation (the return on that investment) in terms of impact on the Participant’s wellbeing and life chances.
This focus might be termed ‘the golden thread’.
The ‘golden thread’ refers to a planning process that ensures that the proposed activities within a draft plan have a direct link to the person’s circumstances. For example, if the person’s circumstances include unemployment, then one would expect the proposed activities to include a focus on moving the person closer to authentic employment.
Therefore, if the Delegate cannot see the golden thread in a Participant’s draft plan, they can invite the Participant to consider revisions so that thread is much clearer. This will help ensure that plans are geared towards Scheme outcomes, without taking the ownership of the plan away from the person, or its context away from community.
In developing the golden thread, the Scheme’s imperatives for individual planning can be understood in terms of two types of benefit: transactional benefits and transformational benefits.
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JFA Purple Orange Submission on general issues around the implementation and performance of the NDIS
Applied to the NDIS, 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, be tailored to the person’s preferences, and be competent, dignified, and completed with kindness.
Typical measures of transactional benefits would be a count of the amount of timely and competent services that were 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.
In the lead up to the National Disability Strategy and subsequently the NDIS, the Australian Government’s national consultation produced the Shut Out5 report, which clearly set out 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.
5 Op. cit.
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JFA Purple Orange Submission on general issues around the implementation and performance of the NDIS
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 significantly 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 that fund 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 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 by Williams (2013) in the Model
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JFA Purple Orange Submission on general issues around the implementation and performance of the NDIS
of Citizenhood Support6, 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 3 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 NDIA’s consideration of assessment.
The Model of Citizenhood Support sets out the types of roles that underpin ‘social and economic participation’, which can assist the NDIA to understand the types of activities in a draft plan that hold the best prospect for delivering social and economic participation. Also, given that true inclusion is complex to deliver, the Four Capitals offer a framework for understanding how to measure the NDIS investment in terms of building the person’s capacity and resources.
Recommendation 5: That the NDIA consider using the Model of Citizenhood Support, as a conceptual framework for framing the planning process
Whatever arrangements the NDIA is proposing to install as part of what can be termed the NDIS Participant Pathway must be able to advance the chances of delivering transactional and transformational benefits.
This means the planning process must be capable of reliably setting out a range of intentions that have a clear link to transactional and transformational benefits.
6 Williams, R. (2013), Model of Citizenhood Support: 2nd edition, Julia Farr Association Inc, Unley South Australia
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JFA Purple Orange Submission on general issues around the implementation and performance of the NDIS
A plan with content that has largely been driven by the results of an Independent Assessment will be unlikely to achieve this. It may have some success in developing a line of sight on transactional benefits – the quantification of supports a person might need to get through their day – but even this is dependent on the Independent Assessment reliably and accurately quantifying all relevant issues. However, it will do less well in mapping transformational benefits, because these are discovered through a more connected conversation, and anchored on a deeper understanding of the person, their history, and their outlook.
Therefore, the Participant’s plan should be developed with the Participant as the central author, assisted to the extent required by a community-based planner who can assist the person to translate their history, circumstances, and preferences into a set of priorities the person wants to make progress on. In this way, the draft plan has a better chance of identifying gaps in the person’s life chances in relation to authentic valued membership of mainstream community life.
The NDIS indicative personal budget is then applied to this draft plan, to identify where the NDIS’s investment might best assist, within the parameters of the Scheme and budget.
Recommendation 6: That the NDIA adopt a planning framework that focuses on transactional and transformational benefits, that places the Participant as the author with assistance from a community-based Planner, and with the NDIA Delegate evaluating the potential effectiveness of a draft plan by looking for a ‘golden thread’
5. The promise of ‘choice and control’ not seen in practice
Once people pass the first hurdle of being accepted as participants in the scheme, people must then turn attention to their planning meeting(s) which were described as highly stressful and sometimes retraumatizing. While some people were satisfied with the outcomes and felt well supported, some felt their NDIS plans did not adequately reflect
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JFA Purple Orange Submission on general issues around the implementation and performance of the NDIS
their level of need and did not allow the most basic of support needs (for example one NDIS participant described only being able to shower once a month due to limited core support while others received funding for items they did not need such as a wheelchair while denied items specific to support needs). The NDIA is under enormous pressure to ensure the scheme remains sustainable and affordable which as a result constrains the NDIA’s core principle of improving ‘choice and control’ and limits the scheme’s capacity to view each as an individual with their own goals for participation in community.
We heard people in our consultations discuss several main issues relating to applying to get into the NDIS, however these issues are critical at every point of the NDIS path.
4.1 Understanding the criteria and rules within NDIS
LACs and NDIA planners have specific criterion when making decisions about participants level of need and subsequent budget and line items. This criterion lacks transparency. We heard that LACs and NDIA planners held a great deal of power and made judgments about the legitimacy and relevance of peoples’ personal circumstances and were responsible for gathering information and transferring appropriately in line with the directives by the NDIA. We heard that people expended a great deal of time and effort trying to understand the NDIS criteria and rules and spoke of the burden being on the participant (and/or nominees) to prove their need. As one person living with disability noted:
“I don’t know any other system that leaves so many people in so much darkness about what it is they’re supposed to be doing in order to meet their requirements.”
It must be acknowledged that there is an emotional toll for people living with disability and/or their nominees and other supporters who must continually communicate their needs and present their case. People with co-occurring disability and chronic illness spoke of how they were excluded because they were not able to pick up a phone or spend time doing emails or paperwork. The process of negotiating bureaucratic systems often aggravated peoples’ conditions and make people sicker.
People were disappointed with the quality of their plan reviews and felt that plans were written in a way that “feels as though it’s a pro-forma”. We heard that personal information
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JFA Purple Orange Submission on general issues around the implementation and performance of the NDIS
participants share may often be misinterpreted and participants are left feeling judged and misunderstood and, in some circumstances, retraumatised and excluded:
“I have, in fact, submitted pages of research documents that are most effective in explaining the functional deficits. I doubt that they have been read. I can’t, obviously, assume that, but there is every chance that they were not considered in aspects of my recent review in that we are now in a re-review process and tweaking because these were not considerations. They were also submitted in functional assessments that were done some six months ago while my plan was simply extended. Then many of the things that were requested some two and a half years ago, were not taken note of. So I have concerns that they’re not actually being considered by the time they silo out because that’s apparently the explanation that I’ve been given, no, that’s this team, that’s this team, that’s this team.”
A lack of clarity regarding what constitutes ‘evidence’ of disability or functional impacts leads to confusion and multiple reviews and assessments from allied health professionals. Transparency about what information the LAC has documented along with the weighting of various evidence would increase understanding at multiple levels (the participant, and their
allied health professionals).
4.2 NDIS language and terminology
There is disconnect between medical terminology and descriptors used in supporting documents from participants, their nominees, doctors and/or allied health professionals and
that of the language used by the NDIA. People in our consultations stated that they had to learn “the NDIS Language” as this is key to meeting the NDIS criteria and rules and receiving supports but also increased anxiety about getting the language wrong as this led to lengthy reviews and appeals. People described collating the evidence and information relating to their disability and functional impacts as “a language game” (a common refrain). People in our consultations observed that those from cultural and linguistically diverse backgrounds (CALD) or those who have lower English literacy face greater disadvantage when trying to understand terminology. One service provider in our consultation reported that they frequently had to go above and beyond their job description in order to link people to the
correct avenues of support and provide a pathway to the NDIS:
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“People are just not receiving what they’re entitled to because they can’t even speak up. Sometimes I go beyond what I’m supposed to do in terms of getting the NDIS plan through, including contacting the GP or making appointments for client and then after that we start thinking about providing support. It’s very frustrating when you see people who can’t speak up. I can see how smart they are, but honestly, they are learning the language so they don’t understand the system, it is just so difficult”
Supports and resources are needed for outreach to people from CALD backgrounds and to provide education and appropriate translation of all documents and resources (including information from the NDIA, LACs and allied health professionals).
In our two consultation groups there were consistent calls to streamline application processes between the NDIS and Centrelink to reduce the administrative burden on people living with disability who are negotiating Centrelink, medical and NDIS administration (let alone regular everyday life administration associated with housing, employment, family, community participation, etc).
Recommendation 7: That the NDIA streamline information gathering and improve pathways for information and evidence transfer that can be useful in building the case for access in applications for both the NDIS and other systems such as Centrelink where possible (ie DSP, Carers allowance)
4.3 Flow of information between participant, LAC and NDIA Planners
LACs play a crucial role and serve as a primary point contact and communication between participants, supporters and the NDIA however we heard of a number of issues relating to this. Issues included LACs being unavailable and unable to return phone calls and emails,
leaving NDIS participants in the dark and waiting for advice or further information on critical issues. Such issues suggest that LACs are overworked and unable to keep up with caseloads. We also heard of significant distrust regarding the LACs and they were regarded as professionals who held a great deal of power and sway given their role in translating key information back to the NDIA. This led to high anxiety for people living with disability and their supporters in planning or review meetings. People described several instances where
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information about functional impact and needs were misinterpreted (for example, one participant described having a wheelchair funded which she did not need whereas other items remained absent).
Many people reported that they had no choice or control over which LAC they were assigned. Some had tried to change LAC but were told they were not allowed to. Some argued that there was a conflict of interest given that the LACs lived and worked in the same local area (and one mentioned attending the same Christmas lunch as their LAC). Such issues are amplified in small cities, towns or in rural areas where there are so few services.
Recommendation 8: That the NDIA enable people living with disability to choose their LAC
Recommendation 9: That the NDIA invest and develop a more robust LAC model and address the high turnover rate of LAC staff to increase participant satisfaction
6. Need for formal advocacy
Advocacy and access to independent support is vital and varies widely depending on state jurisdictions due to varied government funding arrangements. Certainly, in South Australia advocacy services are significantly underfunded, under-resourced and over-stretched. We heard that when people received an NDIS plan which did not meet their needs, they then
faced hard decisions not to contest given the emotional and physical energy, time and resources required to pursue a review. One participant described having enough funding for a support worker to assist her with showering once a month – yet when she spoke to the LAC about this, no further support or advocacy was given. This lack of response normalises systemic neglect and abuse
We heard that support coordinators were often unofficially taking on advocacy roles and supporting participants to understand and negotiate service systems and to work out 22
decisions about appeals. We heard that the local members of parliament held sway and often acted on behalf of constituents with the NDIA. Likewise, some also accessed the South Australian legal service for advocacy support.
As a result of these examples from our stakeholders, we suggest that the NDIA needs to promote and recognise the need for advocacy in all states and territories.
Recommendation 10:
That the NDIA undertake some mapping work to become better informed of how funding for advocacy varies depending on state and territory investment and prioritise building relationships with various jurisdictions.
7. Co-design central to design and implementation of the NDIS
Co-designing with people living with disability and their supporters is key to realizing the full potential of the scheme. The NDIS currently focuses much of its attention on sustainability and migration of people to the scheme and division of responsibilities and costs. While this is important we must also ensure that we remain focused on enacting the ratification of the Convention on the Rights of People with Disability. The realization of the UNCRPD means we need to look beyond the transactional nature of the Scheme (transactional benefits and access to provisions and services) to also explore how the NDIS may also promote transformational benefits and provide in ways that enable flexibility, choice and control, and promote a society where people living with disability have social value and contribute to the economy.
Co-design is often misunderstood and over-used as a concept. Some common issues with co-design include:
- Confusion between consultation (one or two large stakeholder meetings often with 20-50 people) and genuine co-design (a smaller reference group which meets regularly and serves as a point of decision making and validation).
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- People living with disability seen as ‘less’ valued in comparison to professional members – this is often seen when people living with disability contribute a wealth of lived and professional expertise yet are often asked to volunteer whereas the ‘professionals’ at the table are paid by their organisations to attend – this perpetuates a power imbalance and inequity.
- Marginalisation within co-design groups because there is only one or two people living with disability ‘invited’ to a large codesign group where 80 per cent are family members, providers or professionals from private and public sector organisations. This contributes to powerlessness and dominance of ‘supporters’ voices rather than voice of people living with disability.
Realising the full potential of the scheme will require ongoing monitoring and refinement, and with this comes a responsibility to develop a high standard of co-design which remains continuous and built into every aspect of the NDIS. The community should not have to continuously demand co-design, rather co-design should be understood as central to all parts of the NDIS.
We suggest that a target could be at least 50 per cent people living with disability on the NDIA board and as part of the Independent Advisory Council sitting alongside key stakeholders such as family members, providers, NDIA, DSS and politicians. This would ensure a balance of perspectives and also address the power inequities that occur inevitably when there is one or two people living with disability speaking to a room of stakeholders who do not share similar perspectives or insight.
Recommendation 11: That the NDIA commits to a genuine co-design approach for all aspects of Scheme development and adopts a plan for implementing this approach in a manner that ensures the codesign process maintains a high representation of people living with disability including people from demographics that are often the least likely to be heard
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8. Conclusion
Thank you for the opportunity to submit and we invite the Committee to contact us to discuss these issues further.
In this submission we have summarised the key points we have heard in the two focus groups we ran (one online and one in person), as well as from what people have shared with us generally across our peer support groups and in the co-design and consultative work we do.
The design and implementation of the NDIS is of critical importance to people living with disability. The NDIS currently focuses much of its attention on sustainability and migration of people to the scheme and division of responsibilities, however it is important to also ensure that we remain centred on enacting the ratification of the Convention on the Rights of People with Disability. The realisation of the UNCRPD means we need to look beyond the transactional nature of the scheme (transactional benefits and access to provisions and services) to also explore how the NDIS may also promote transformational benefits and provide in ways that enable flexibility, choice and control and promote a society where
people living with disability have social value and contribute to the economy.
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