Submission to the Senate Standing

Committee on Community Affairs

about the proposed NDIS Amendment (Participant Service Guarantee and Other Measures) Bill 2021 and draft NDIS Rules

8 November 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

Address:

104 Greenhill Road
Unley SA 5061 AUSTRALIA

Contact Information:

Telephone: + 61 (8) 8373 8333
Fax: + 61 (8) 8373 8373
Email: admin@purpleorange.org.au
Website: www.purpleorange.org.au
Facebook: www.facebook.com/jfapurpleorange

Contributors

Cathy Cochrane, Policy and Research Leader
Ellen Fraser-Barbour, Policy and Research Leader
Mikaila Grotty, Team Leader – Policy and Projects
Robbi Williams, CEO

Summary and recommendations ……………………………………………………. 4
Introduction …………………………………………………………………………………. 8

Participant Service Guarantee ………………………………………………………… 10

3.1. Engagement principles and service standards ……………………………………….. 10

 3.1.1. Transparency ............................................................................................ 10

 3.1.2. Responsiveness ........................................................................................ 11

 3.1.3. Respect ...................................................................................................... 12

 3.1.4. Empowerment ........................................................................................... 12

 3.1.5. Connectedness ........................................................................................... 14

3.2. Timeframes and related obligations ……………………………………………………….. 14

Flexibility measures and other matters ……………………………………………………… 17

4.1. Participant pathway ……………………………………………………………………………. 18

4.2. Variation and reassessment of plans ………………………………………………………. 20

4.3. Board members ………………………………………………………………………………….. 22

4.4. Co-design ………………………………………………………………………………………….. 23

4.5. Future reforms …………………………………………………………………………………… 24

Conclusion …………………………………………………………………………………………………. 25

Appendices ……………………………………………………………………………………………. 26

Summary and recommendations

JFA Purple Orange welcomes the proposed Participant Service Guarantee and broadly supports measures to clarify and improve the flexibility of processes within the NDIS participant pathway.

In the first section of this submission, we make a number of recommendations that we believe will strengthen the Guarantee and improve the participant experience. Additionally, we are concerned that the focus on a regime of complex timeframes for the NDIA will impact on the quality of processes, decisions and outcomes. We recommend that the design of the timeframes should be streamlined and simplified to reflect the key stages in the participant pathway and to identify those that are currently subject to long delays. These timeframes should be accompanied by obligations to protect and enhance the quality of the NDIA’s performance.

In the second section, we address some of the important changes among the flexibility measures and other matters. We are apprehensive about the proliferation of documents underpinning the NDIS and note that these reforms create another two sets of Rules. We are also concerned about the absence of definitions and explanations of new terms in the Bill and Rules documents. The recognition of “fluctuating” and “episodic” functional impacts of psychosocial disability is welcome, but raises the question of the broader relevance of this for the NDIS generally. We support the introduction of “plan variations” and “plan reassessments” – both in terminology and substance – but suggest the Bill make a clear and precise demarcation about the circumstances leading to each. We are extremely concerned about the broad power granted to the CEO of the NDIA to make plan variations on the CEO’s own initiative and argue that further provisions should be added to the Bill to appropriately constrain this power. We wholeheartedly support the commitment to co-design in the future; however our optimism is tempered by the lack of detail about what this will involve in practice.

We recommend:

Recommendation 1: The responsiveness principle should be expanded to include a commitment to a highly skilled, values-orientated workforce that is knowledgeable about

the NDIS and empathetic about disability. This should include a commitment to training,
ongoing professional development, and the retention of experienced staff.
responsiveness principle should be expanded to include a
commitment to the consistency of processes, decision-making, and outcomes across the
NDIS.
empowerment principle should be underpinned by the NDIA
adopting more flexible and adaptive approaches within the participant pathway to ensure
participant experiences are genuinely empowering.
connectedness principle should be expanded to include an explicit
commitment to accessibility and inclusion by the NDIA and within all facets of the NDIS.
Addressing the shortcomings in access and inclusion for Indigenous, culturally and linguistically diverse, and rural and remote communities should be prioritised with a
commitment of additional dedicated resources to ensure the ambitions of the Participant Service Guarantee are achieved for these groups.
Obligations to protect and enhance the quality of all aspects of the
participant pathway and decision-making processes should accompany setting timeframes
within the Participant Service Guarantee. The Commonwealth Ombudsman should report
against these quality obligations in addition to the timeframes.
Consideration should be given to how the design of the timeframes
could be streamlined and simplified to focus on key stages in the participant pathway and
the areas of current delays, including by reducing the number of timeframes and/or the variation in duration of the timeframes.
Preference should be given to enshrining these reforms in Plain English
provisions within the Act and minimising the need to expand the plethora of documents

Recommendations

currently supporting the NDIS. New terms added to the Act and Rules must be clearly defined and easily understood by participants and stakeholders.

Recognition of episodic and fluctuating functional impacts should extend to a broader range of disabilities.
The options of a plan variation and a plan reassessment should be more clearly explained in the Bill. The Bill and Rules should more explicitly state the circumstances in which a plan variation can be sought by a participant and when a full reassessment is required in order to increase participants’ certainty about the new approach.
The broad power of the CEO to vary a plan on the CEO’s own initiative should be constrained so that ordinarily the consent of a participant or nominee is required. A tightly constrained power for a variation on the CEO’s own initiative for emergency uses only should be considered instead.
Consideration should be given to how the inclusion on the NDIA board of people living with disability and people with broader lived experience of disability can be guaranteed within the provisions of the Bill.
The provision to include people living with disability in a co-design capacity should be expanded to clearly state what co-design is and when and how it should be used by governments, departments and the NDIA.
The government should adopt a genuine co-design approach for future reforms and ensure that public consultation processes are accessible and inclusive of all people living with disability.

Recommendation 14

That a quality assurance step be applied at the final stage of drafting of the Bill and Rules to test the proposed changes for their capacity to uphold and advance participant control and choice, and participant take-up of ordinary life chances.

Introduction

JFA Purple Orange thanks the Senate Standing Committee on Community Affairs for the opportunity to make this submission regarding proposed reforms to the National Disability Insurance Scheme (NDIS). We broadly support the government’s aim of improving the NDIS participant experience and strengthening and clarifying rules and processes to make accessing and using the scheme more straightforward for participants, their families, and informal supports.

Although this inquiry focuses on the Bill that is before parliament, the proposed reforms are contained across a number of documents:

the National Disability Insurance Scheme Amendment (Participant Service Guarantee and Other Measures) Bill 2021;
two proposed new Rules documents
- the National Disability Insurance Scheme (Participant Service Guarantee) Rules 2021,
- the National Disability Insurance Scheme (Plan Administration) Rules 2021;
amendments to two existing Rules documents
- the National Disability Insurance Scheme (Plan Management) Rules 2013,
- the National Disability Insurance Scheme (Becoming a Participant) Rules 2016;
and updates to three existing Rules documents
- the National Disability Insurance Scheme (Children) Rules 2013,
- the National Disability Insurance Scheme (Nominees) Rules 2013,
- the National Disability Insurance Scheme (Specialist Disability Accommodation) Rules 2020.

As such, a consideration of the Bill in isolation from the other documents would result in an incomplete assessment of the reforms. In this submission, we do not limit our comments to the Bill alone; instead, we address key issues in the reform package as a whole.

The breadth of the matters covered in these reforms has made the short consultation periods – both for the initial consultation conducted by the Department of Social Services and now for the inquiry of this Committee – extremely challenging for stakeholders. Consequently, our submission is limited to two parts. First, we discuss the proposed

Participant Service Guarantee’s engagement principles and service standards and the timeframes and related obligations. Second, we focus on a number of important matters raised by the changes orientated toward increasing the flexibility of NDIS processes, as well as providing comment on how the government can progress the remaining reforms it has foreshadowed but not included in the changes that are the subject of this inquiry.

The recommendations we present in this submission build on those we provided in our previous submission regarding similar issues in 2019. That submission drew heavily on input from people living with disability through a range of focus groups, consultations and surveys. In late September 2021, we held two consultation meetings for people living with disability and their supporters regarding general issues in the NDIS. What we heard in these meetings, as well as through our ongoing work in systemic advocacy in South Australia, also informs this submission.

JFA Purple Orange is committed to seeing the NDIS achieve its full potential to support the life chances of people living with disability.

Participant Service Guarantee

JFA Purple Orange supports the government’s decision to introduce a Participant Service Guarantee. The proposed Guarantee will enshrine important principles for the way the National Disability Insurance Agency (NDIA) carries out its work, as well as providing NDIS participants with certainty about the service standards they can expect when engaging with the agency. We also welcome the new role of the Commonwealth Ombudsman to report annually on the performance of the NDIA.

However, we believe the proposed engagement principles and service standards can be improved. We also wish to draw the Committee’s attention to our concerns about the design of the timeframes and the potential for the focus on timeframes to impact the quality of the NDIA’s performance. In this section, we discuss matters related to the Guarantee arising from both the legislative amendments in “Schedule 1 – Participant Service Guarantee” of the National Disability Insurance Scheme Amendment (Participant Service Guarantee and Other Measures) Bill 2021 and the proposed “National Disability Insurance Scheme (Participant Service Guarantee) Rules 2021”.

Engagement Principles and Service Standards

We support the identification and implementation of key engagement principles and service standards for the NDIA and hope these will help improve the experiences of NDIS participants and prospective participants. Given that adherence to principles can be difficult to measure and hard to enforce, we urge the Committee to carefully consider how these principles and standards will be achieved in practice. The NDIA will need to prioritise building a leadership team, workforce, and agency culture that embodies the values that support the achievement of these engagement principles and service standards.

Transparency

We welcome a commitment to transparency and to ensuring the accessibility of both general and personal information for participants and prospective participants. We urge the NDIA to engage with people living with disability to develop accessible information tools and

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formats for a broad range of users and to adopt a flexible approach to meeting individual communication needs.

3.1.2. Responsiveness

We support the inclusion of responsiveness in the engagement principles and service standards. However, we believe that a key component of delivering responsiveness is ensuring that staff are well-trained and knowledgeable about disability and the NDIS. It is essential that the NDIA is committed to workforce development and retention. We are regularly told that NDIS participants feel their needs are misunderstood and when they try to educate staff about the functional impact of disability they feel unheard and unsupported. Such experiences of being misunderstood, together with the inadequate access to services, result in many NIDS participants experiencing distrust, trauma and distress when attempting to liaise with the NDIA.

To fulfil the principle of responsiveness, the NDIA needs to commit to building a well-resourced, skilled and values-orientated workforce where staff have the desire and capacity to spend time building relationships with participants over time. Staff should be experts about the NDIS and be reflective and sensitive to the needs of people living with disability who are negotiating pathways to support. The NDIA should deliver training to all new staff to enable them to improve responsiveness, as well as providing ongoing professional development (particularly with regards to the ways in which unresponsiveness may contribute to trauma-experiences and impact mental health) as part of a strategy to retain experienced staff.

We acknowledge that the transparency principle includes a commitment to providing consistent information (as mentioned above), but it is crucial that consistency also applies to processes and decision-making across the NDIS. NDIS participants have told us about wide variations in budgets given to different participants with similar needs within a particular facet of their plans. We have heard about a number of contributing factors that result in this wide variability including (but not limited to):

The approach of the LAC and/or NDIA planner a participant deals with

The participant or nominee’s capacity to self-advocate, explain and communicate their needs using the language accepted by the NDIA
The extent of involvement by informal supports, such as family members
Whether or not a participant has access to independent professional advocacy services
The ability of their doctors, specialists, or therapists to adhere to the NDIA’s favoured terminology, phrases, and words in their reports

It must also be noted that some participants have greater resources and capacity to appeal and gather people (even in some cases their local member of parliament) to intervene on their behalf. We fully support the goal that the NDIA should assess the individuality of each participant’s situation, however this does not negate the responsibility of the agency to fairly respond to all participants and prospective participants and ensure the principle of

equity is adhered to.

Recommendation 1: The responsiveness principle should be expanded to include a commitment to a highly skilled, values-orientated workforce that is knowledgeable about the NDIS and empathetic about disability. This should include a commitment to training, ongoing professional development, and the retention of experienced staff.

Recommendation 2: The responsiveness principle should be expanded to include a commitment to the consistency of processes, decision-making, and outcomes across the NDIS.

3.1.3. Respect

We agree that respect for people living with disability as participants or prospective participants must be the cornerstone of the NDIS. This should extend to family members, informal supporters, and all others involved in the NDIS.

3.1.4. Empowerment

We recognise that the NDIS aims to focus on a person’s strengths and individual goals, hhowever we are concerned that current processes do not always achieve this or, conversely, that planning meetings can fail to fully capture everyday needs due to a focus on

Overarching Goals

We have been told that some NDIS participants, particularly those with high and complex needs, receive plans that reflect low expectations and reinforce these people as recipients of services rather than active valued contributors to community life. In planning meetings, there can be less focus on these participants pursuing their goals, maximising their independence, and fully participating in their communities. This is disempowering.

On the other hand, some participants, usually with less complex support needs or perhaps living with less visible disability, have told us that they feel forced to fight for adequate budgets, especially in core support areas, because the process for them is orientated toward broader goals. This requires them to emphasise “deficits” and “incapacity” in order to convince the NDIA that these basic supports are reasonable and necessary. When needs are missed within plans, or a person is told a support is not reasonable and necessary, effectively, because they are “not disabled enough”, this problem is exacerbated because a person must go to great lengths to “prove” their “impairments” and “incapacity.” NDIS participants find this process demoralising and feel that they must put themselves down and highlight everything they cannot do in order to obtain budgets to access the everyday supports and services they need. This is also disempowering, and highly detrimental to a person’s Personal Capital1.

We are concerned that the NDIA’s processes, as they are currently followed in the participant pathway, do not always fulfil the twin objectives of understanding and supporting everyday needs while also taking a strengths-based approach to capacity building and individual goals so that all participants can move into rich and fulfilling lives characterised by choice and active valued membership of mainstream community life. Left unaddressed, these two contrasting participant experiences will likely hamper the NDIA in fulfilling the engagement principle and service standard of empowerment. We urge the NDIA to consider how the participant pathway can be made more flexible and adaptive to

Connectedness

We support the inclusion of connectedness in the engagement principles and services standards. However, we underscore that achieving this will require a commitment of additional staff and resources, particularly for First Nations, culturally and linguistically diverse, and rural and remote communities. It is essential that the NDIA takes a proactive approach to removing barriers, overcoming the tyranny of distance, and ensuring all Australians living with disability can access the NDIS on an equal basis regardless of background or location. This includes a commitment to the accessibility of all information and communications (such as, by providing Easy English versions of documents, accessible websites, and tagging of documents for screen readers) and of NDIA offices and venues.

Recommendation 4: The connectedness principle should be expanded to include an explicit commitment to accessibility and inclusion by the NDIA and within all facets of the NDIS. Addressing the shortcomings in access and inclusion for Indigenous, culturally and linguistically diverse, and rural and remote communities should be prioritised with a commitment of additional dedicated resources to ensure the ambitions of the Participant Service Guarantee are achieved for these groups.

We welcome the decision to implement timeframes for how long decisions and other processes should take as part of the proposed Guarantee. These timeframes will provide participants with some certainty about what to expect and ensure that there is greater consistency across participant experiences when interacting with the NDIS. They also create measurable and reportable outcomes that will increase the accountability of the NDIA.

However, we have some concerns about the focus on timeframes without similarly addressing the issues of quality, as well as about the design of the timeframes themselves.
It is important that the focus on timeframes does not undermine the quality of processes and outcomes for participants. If the proposed Guarantee increases the speed of transactions with the NDIA, but the quality of decisions and planning suffers as a result, this
will have serious consequences for the performance of the agency and the capacity of the NDIS to achieve the outcomes originally envisaged for the scheme.
We propose that the timeframes should be accompanied by provisions to protect and enhance the quality of all aspects of the participant pathway. It should include obligations that participants receive clear guidance about what the processes of engagement, consultation and deliberation will involve and how and when decisions will be made. Additionally, we consider that transparency about the decision-making criteria, and the reasons for decisions, is essential to improving the experience of prospective participants and participants. Providing the reasons for decisions made by the NDIA to participants should be routine, not optional on request, and we welcome updates to the Bill, as
introduced to parliament, that will achieve this outcome in some instances.
We are also concerned that the number of timeframes established and the variation in their length creates complexity and risks further confusing participants and prospective participants about what to expect when applying for access, negotiating the planning process, or seeking reviews. The exposure drafts of the Bill and the Guarantee indicate to us that about 18 timeframes (noting that the complexity and conditionality makes discerning a precise number difficult) will be established between these documents, with numerous provisions allowing for adjustments to timeframes. The length of these timeframes will range from seven days to 90 days, with eight different duration lengths set for various
processes – 7, 14, 21, 28, 50, 56, 60 and 90 days. The risk that implementing too many timeframes with too much complexity could undermine quality was highlighted by the Tune Review (at 10.3, p.153):

… the Guarantee should not assign timeframes for every interaction a prospective participant or participant may have with the NDIA. There is a continuum in the degree of prescription in legislation, too much will take

away from the performance and outcomes focus the Guarantee is seeking to achieve.

Streamlining the design of these timeframes to focus on key stages in the participant pathway, and to reflect areas that currently have long delays, would help ensure that participants are provided with clear and easily identifiable parameters of what to expect and are better able to proactively follow up with the agency if a timeframe is exceeded. It would also make it easier for NDIA staff to adhere to the new requirements without sacrificing quality and performance.

In consultations, people living with disability have told us that while the NDIA has significantly improved its response times recently, there has been little change to the quality of planning, plan documents, and other interactions with the NDIA. While addressing long waiting times and establishing measurable performance standards to improve the accountability of the NDIA are important goals for the reforms, we urge the parliament to ensure that the need to protect and enhance the quality of the implementation of the NDIS receives equal weighting within the proposed Guarantee. It is essential that the new reporting role of the Commonwealth Ombudsman also encompasses the quality of the participant experience, not just the speed of processes and interactions.

Recommendation 5: Obligations to protect and enhance the quality of all aspects of the participant pathway and decision-making processes should accompany setting timeframes within the Participant Service Guarantee. The Commonwealth Ombudsman should report against these quality obligations in addition to the timeframes.

Recommendation 6: Consideration should be given to how the design of the timeframes could be streamlined and simplified to focus on key stages in the participant pathway and the areas of current delays, including by reducing the number of timeframes and/or the variation in duration of the timeframes.

Flexibility Measures and Other Matters

In addition to establishing a Participant Service Guarantee, these reforms address a range of flexibility issues and other matters. We broadly support the new measures to increase flexibility and make it easier for participants to negotiate NDIS processes. Nevertheless, we wish to raise some concerns with these reforms and highlight areas where we believe improvements can be made.

In this section, we focus on some of the most important changes in “Schedule 2 – Flexibility measures” of the National Disability Insurance Scheme Amendment (Participant Service Guarantee and Other Measures) Bill 2021 and the other new, amended, and updated Rules documents. Before addressing specific issues below, we

wish to draw the Committee’s attention to three overarching matters of concern.

First, the ability of NDIS participants and stakeholders to assess the proposed reforms is hampered by the addition of broad powers and principles in the Bill and Rules without clear information about how these may be used by the NDIA in the future. We believe that parliament, through legislation, should provide clear direction to the NDIA rather than leaving so much to the CEO’s discretion. In an environment where trust in the NDIA has been eroded, this lack of explanation of the future plans underpinning some of the changes makes it very difficult to provide feedback to this inquiry. For example, the changes to Section 14 of the Act, together with the new Plan Administration Rules, particularly Rule

5(c), appear to allow market interventions by the NDIA including to “promote the diversity and sustainability of the NDIS market at the location where the participant lives.” We are very aware of the lack of services in many regional, rural and remote areas of Australia and would welcome measures that effectively address this problem. However, the new provisions and explanatory materials lack detail on how this will be implemented in practice, making it very difficult to assess whether this change is likely to lead to any meaningful improvements for participants who are more geographically isolated than those living in cities.

Second, we are apprehensive about the ever-increasing number of documents that

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created since the scheme’s inception. Breaking down this complexity and streamlining processes should be a priority for governments, the parliament, the department, and the NDIA going forward.

One area of complexity and frustration in the participant pathway that these reforms seek to address is the issue of permanency. The recognition of the often fluctuating and episodic

functional impacts of psychosocial disability is welcome, but raises the question of why this approach will not be applied for other disabilities with similar episodic impacts, for example Multiple Sclerosis, to ensure consistency. We urge the Committee to consider the broader relevance of this recognition of the fluctuating and episodic nature of the functional impacts of disability to the NDIS generally.

Additionally, the manner in which the recognition of the fluctuating and episodic nature of psychosocial disability will be applied is unclear. Neither “fluctuating” nor “episodic” are defined in the Bill. Similarly, the changes to the Becoming a Participant Rules do not include definitions or adequate explanations of key phrases, raising many unanswered questions, including what is an “appropriate treatment”, a “substantial improvement”, a “period of

time that is reasonable“, and a “reasonably available” treatment, as well as what constitutes “managing” a condition? All these questions will illicit different responses depending on who is answering, and this will inevitably give rise to inconsistencies in their application across the NDIS and further uncertainty for participants and prospective participants.

Many participants have long and varied histories interacting with medical and allied health systems, and some will have strong emotions and trauma arising from past treatments. As recommended above, the Act and the Rules should always define crucial terms and not leave them open to inconsistent interpretations. Doing so may also help ensure that negotiating the interface between the public health system and the NDIS is easier for future

NDIS participants living with psychosocial disability.

Recommendation 8: Recognition of episodic and fluctuating functional impacts should extend to a broader range of disabilities.

4.2. Variation and reassessment of plans

We welcome the addition of explicit provisions and new terminology in the Bill and Plan Administration Rules regarding “plan variations” and “plan reassessments”. The plan variation option will create a clearer pathway to address minor issues with a plan instead of the current more vague practice of “light touch” reviews by the NDIA. Also, applying the term “review” to internal and external reviews only and not to the range of processes currently referred to as reviews will help reduce confusion. It may be a while before these new terms take hold among NDIS participants and stakeholders, but over time the unique terms for different processes will be beneficial.

Nevertheless, we suggest that the provisions in the Bill and Rules be revised further to clearly define the new terminology and to explicitly state the circumstances when an aspect of a plan can be varied rather than a whole plan being reassessed. A further issue is created in the updated Bill introduced to parliament with the inclusion of an additional provision to allow that “if the participant requests a variation of the participant’s plan, any variation … may be different from the one requested” (Section 47A(9)). This broadens the CEO’s powers and potentially opens the way for the creation, in practice, of a hybrid option that sits somewhere between a limited plan variation and a full plan reassessment. We have heard from participants that in the past they have avoided addressing small problems with a specific budget because they fear that changes will be made to other parts of their plan. This change appears to enshrine this possibility in the legislation. We argue that the Bill should explicitly create two options only – a limited variation to a specific aspect of a plan or a full reassessment of a plan – and that a precise demarcation between these two options should be clearly articulated.

Additionally, the proposed Section 47A that allows a participant’s plan to be varied by the CEO on the CEO’s own initiative is extremely concerning. We understand that this may, in some cases, assist in fixing errors or other problems with urgency or in an emergency. However, we believe the absence of sufficient conditions or constraints on this power leaves it open to potential misuse and may deepen distrust of the NDIA and increase anxiety among participants about supports being changed or taken away in a manner that can

disrupt a person’s life or cause harm. The Tune Review contemplated change in this area but
did not suggest such an open-ended power for the CEO.

The Bill introduced to parliament has been updated since the exposure draft to indicate the participant will be informed of a proposed variation by the CEO, however this change does not go far enough to allay our concerns. The meaning of the additional phrase “each”

variation must be prepared with the participant“ (Section 47A(1)) is unclear and it does not constrain the broad power of the CEO to vary a plan on the CEO’s own initiative. Although we welcome the inclusion in the legislation of the limits on variations (Section 47A(1)) and the “Requirements of CEO” (Section 47A(3)), too many important matters are still left to the Rules for explanation. Additionally, the content of these provisions remains overly broad and is inadequate to appropriately constrain the power of the CEO or to diminish the understandable anxiety of participants in relation to this issue.

We suggest that the Bill include provisions that the CEO would ordinarily be required to consult with the participant or nominee and obtain consent for any variation. This could be accompanied by a tightly constrained power for variations on the CEO’s own initiative in

cases of emergency only. Unequivocal conditions regarding communicating with a participant or nominee as soon as possible when such an emergency variation is made and ensuring these decisions are reviewable, as well as a requirement for the NDIA to publicly report on the extent of its use of this power, should also be included.

We note that the Bill also provides for the making of additional Rules related to these matters. Unfortunately, how the accompanying NDIS Rules will be updated to reflect this change to the Bill has not been made public so further feedback on the overall impact of this reform on participants is not possible at this time.

Recommendation 9: The options of a plan variation and a plan reassessment should be

more clearly explained in the Bill. The Bill and Rules should more explicitly state the circumstances in which a plan variation can be sought by a participant and when a full reassessment is required in order to increase participants’ certainty about the new approach.

Recommendation 10

The broad power of the CEO to vary a plan on the CEO’s own initiative should be constrained so that ordinarily the consent of a participant or nominee is required. A tightly constrained power for a variation on the CEO’s own initiative for emergency uses only should be considered instead.

4.3. Board members

We strongly support the inclusion in the updated Bill introduced to parliament of both a “person with disability” and a “person that has lived experience with disability” as additional elements of eligibility when the Minister appoints a person as an NDIA board member. We recognise that the experience of living with a disability is quite different from the experience of being a family member of a person living with disability. We support the distinction between the experiences of people living with disability, including the functional and emotional impacts day-to-day, and the experiences of those in a supporting role. We believe that the experiences of people living with disability must be heard at the board level (and all other levels) and that this should be recognised separately from broader experiences of disability. While all types of experience of disability can contribute great value to the board and should be included, we agree that the unique experiences of those living with disability should be privileged and specifically recognised.

However, we are concerned that the additional phrase “the Minister must ensure that the Board members collectively possess an appropriate balance of characteristics” (Section 127) does not define what an “appropriate balance” is and, consequently, the benefits of the new provision may not be fully realised. The proportion of board members who are people with disability or who have lived experience with disability may be too low for those voices to be heard or sufficiently elevated in decision-making processes.

Recommendation 11

Consideration should be given to how the inclusion on the NDIA board of people living with disability and people with broader lived experience of disability can be guaranteed within the provisions of the Bill.

4.4. Co-design

We wholeheartedly support co-design approaches to policymaking and welcome the inclusion of the statement in the Bill that people living with disability should be included in a co-design capacity. This reflects the desire of people living with disability and the broader disability community to partner with government and the NDIA in supporting and strengthening the NDIS to fulfil its original promise.

Nevertheless, our optimism for the future of co-design in the NDIS is tempered by the lack of detail in the Bill about what this term means to the government, the department and the NDIA and when it will be used. The terminology of “co-design” can be given many different meanings and is sometimes used for processes that resemble communication or consultation rather than a genuine “co-design” process such as that which our agency uses and promotes.

The provision in the Bill should elaborate on what is meant by “co-design” so that the parliament can ensure that the processes adopted are an authentic form of co-design. Equally, the provision should provide details about when and how co-design should be used to guide its implementation. These additions would underpin work by the Independent Advisory Council to strengthen the mutual relationship between the disability community and the NDIA and to develop a roadmap for future engagement aimed at improving the implementation of the NDIS.

We have heard from people living with disability that they often feel excluded from decision making forums and that often non-disabled people are making decisions for people living with disability. The government, the parliament, the department, and the NDIA should take note of “who” is in the room when decisions are made.

The NDIS is at an important juncture and there is a huge opportunity for best-practice co-design to be a key feature of how the NDIS is strengthened and sustained into the future.

JFA Purple Orange has recently co-designed a “Guide to Co-Design with people living with disability” and we believe this document can support the implementation of genuine co-design processes. We have attached a copy as an appendix, and we offer it as an example, not as the definitive guide.

Future Reforms

Recommendation 12:

The provision to include people living with disability in a co-design capacity should be expanded to clearly state what co-design is and when and how it should be used by governments, departments and the NDIA.

4.5. Future reforms

The government has foreshadowed further changes to the NDIS, including in response to other recommendations of the Tune Review that are not addressed within these reforms. Likely future changes regarding independent assessments, “reasonable and necessary”, plan budgeting, debt recovery powers, and other matters continue to cause anxiety within the disability community. Issues raised by appeals to the Administrative Appeals Tribunal (AAT) also remain unresolved by these reforms despite many being of a technical nature. For example, the issue of seeking additional supports during a review, including instances where the meaning of forms of words used in funding requests is at issue, could be circumvented by a seemingly straightforward amendment to the Act. We urge the government to consider adding such an amendment to this Bill in order to clarify and simplify the AAT’s powers regarding appeals.

We appreciate the complexity, time, and workload associated with addressing the more significant outstanding issues; however, it is essential that they be resolved as a priority to ensure that trust in the NDIA and the NDIS itself can be rebuilt. The government must engage with people living with disability in a genuine co-design process, as well as accessible public consultations, to chart the best path forward for the NDIS.

Recommendation 13:

The government should adopt a genuine co-design approach for future reforms and ensure that public consultation processes are accessible and inclusive of all people living with disability.

Conclusion

We are grateful to the Committee for the opportunity to provide this submission on the proposed Participant Service Guarantee, flexibility measures, and other matters. We hope that our submission assists the Committee, the parliament, the government, the department, and the NDIA to improve the participant experience of the NDIS and to strengthen and clarify processes within the participant pathway.

JFA Purple Orange has developed skills and expertise in co-design approaches over many years. As mentioned above, we have co-designed a “Guide to Co-Design with people living with disability” and our agency has a strong track record of implementing co-design approaches across a range of projects and initiatives. We believe we are well-placed to provide expert guidance to assist in the implementation of best-practice co-design approaches for the NDIS. We have also developed the Model of Citizenhood Support, referenced earlier in this submission, that can provide a helpful framework for assessing the helpfulness of an agent, an agency, or a system. As such, we recommend that a quality assurance be applied to the final stages of the Bill’s drafting, that test its capacity to (1) uphold and advance the control and choice of people living with disability in relation to ordinary life chances, the (2) sufficient material resources for participants to realise those life chances.

Recommendation 14: That a quality assurance step be applied at the final stage of drafting of the Bill and Rules to test the proposed changes for their capacity to uphold and advance participant control and choice, and participant take-up of ordinary life chances.

We welcome the opportunity for further discussion with the Committee, the government, the department, and the NDIA, about the recommendations in this submission, about co-design, and about Citizenhood Support. Please contact Mr Robbi Williams, CEO of JFA Purple Orange on

Appendix

List of appendices:

Our October 2019 submission, entitled “Submission to Department of Social Services about establishing a Participant Service Guarantee and review of the NDIS Act.”
The guide, entitled “Guide to Co-Design with people living with disability.”,

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Policy analysis and advocacy for people living with disability and their families