Parkinson’s NSW – 07/10/2021

PNSW believes that the proposed key changes set out in Schedule 1 (Participant Service Guarantee) are clearly articulated and communicate the key components of the Schedule whereby the NDIA will ensure:
 Prescribed access and planning timeframes are met
 Service standards will be applied
 Reporting on how well the Agency is delivering all parts of Schedule 1
It is the implementation of Schedule 1 as proposed in the new Participant Service Guarantee Rule where there are uncertainties. Refer to PNSW detailed feedback on the NDIS Rule – The Participant Service Guarantee

PNSW is unable to comment on this until the final Schedule 1 amendment is ratified by government and the final version of the Schedule 1 Rule is released for implementation. It is however predictable that given that Schedule 1 is a new addition in the Bill, unintended consequences may arise if the PSG Rule does not adequately support effective implementation of Schedule 1 in terms of providing the guarantee of quality service that is intended by the Bill.

Yes – PNSW asserts there are 2 major areas of missing reform that need to be resolved in order for the NDIS to actualise the goals of the new Bill:
 Resolving how functional assessments of NDIS applicants and participants will be conducted, and
 Resolving the lack of clarity, transparency subjectivity and confusion around what constitutes “reasonable and necessary” supports for the purpose of developing meaningful participant plans that will meet the needs of any person living with disability.
PNSW advocates to the NDIA that until these reforms are in place, the new Bill will need to undergo more future amendment. If those bodies of work had have been completed prior to or concurrently with the amendment to the NDIS Act of 2013 reform would have been more meaningful.

 PNSW offers support services including NDIS supports to any person in Australia who is impacted by Parkinson’s – whether a diagnosed person or their family, carers and supporters. PNSW is passionate about equitably supporting people no matter where they live. Clinical assessments to support eligibility claims may be difficult to secure in regional areas due to “thin market” issues – raising an equity imbalance that severely impacts on the psychosocial and financial wellbeing of people with Parkinson’s who may have to travel long distances to get the health and allied health assessment and supports they need. The NDIA must address this issue as it could be seen as a design flaw of the NDIS. A possible resolution could involve the NDIS funding assessments rather than expecting potential participants to self-fund their functional assessments – especially if it means they have to incur significant travel and daily expenses to specialists in city locations.
 Feedback received from PNSW participants who are existing, new or applying for access tell us that they often struggle to understand the language of the NDIS – extensive education and resources for participants will be required and professional development of NDIA planners will be required to be able to communicate the Schedule 1 changes effectively so as to limit confusion and frustration.
 Feedback to PNSW from some NDIS participants indicates that they struggle to understand their plan and that simplifying the terminology and language in plans may make them more user-friendly and easier to read and possibly reduce participant anxiety.
 PNSW supports all 7 principles of the proposed Service Standards within the Participant Service Guarantee as they will demonstrate engagement, collaboration and co-design:
a. Timely responses
b. Engaging with people with disability (more needs to be done in terms of employing participants in the NDIA and having them at all levels of management)
c. Expert NDIA staff (there currently appears to be great inconsistency and lack of disability knowledge amongst many NDIA staff)
d. Connection with governments and agencies
e. Participants feel valued (improving service via the Participant Service Guarantee will help towards this)
f. Decisions made objectively on merit
g. Ease of accessibility to the NDIS for ALL participant cohorts including people living with Parkinson’s
 PNSW asserts to the NDIA that additional professional independent and funded advocacy supports and services for participants with complex needs is required to ensure their NDIS experience is positive as they transition to the new Participant Service Guarantee initiative.

PNSW believes that the proposed key changes set out in Schedule 2 (Flexibility Measures) are clearly articulated and communicate the key components of the Schedule to participants and service providers whereby the NDIA will ensure:
 Strengthening the central role of people with disability in co-design
 Recognition and relationships between participants and their carers and families
 It provides more flexibility to access supports
 Help children to access to early support
 More protection to participants who elect to use a registered plan management provider
 Simplified payment processes on behalf of participants
It is the implementation of Schedule 2 as proposed in the new Participant Service Guarantee Rule and the Plan Administration Rules where there are uncertainties in how effective implementation of reform will succeed. Refer to PNSW detailed feedback on both the NDIS Rule – The Participant Service Guarantee and the NDIS Rule – Plan Administration.

Yes. The amendments in Schedule 2 are declared to include recognition of the rights and diversity of people with disability and to improve the experience of participants, including by:
 “strengthening the objects and principles of the Act to acknowledge the central role of people with disability in co-design and the need to recognise and respect the relationship between people with disability and their families and carers”
PNSW asserts that Schedule 2 and the 2 new Rules do not go far enough to achieve this outcome and the unintended consequence of this could be that NDIS participants and their loved ones perceive this as an unfulfilled tokenistic promise.

Yes – PNSW asserts there are 2 major areas of missing reform that need to be resolved in order for the NDIS to actualise the goals of the new Bill:
 Resolving how functional assessments of NDIS applicants and participants will be conducted, and
 Resolving the lack of clarity, transparency subjectivity and confusion around what constitutes “reasonable and necessary” supports for the purpose of developing meaningful participant plans that will meet the needs of any person living with disability
PNSW advocates to the NDIA that until these reforms are in place, the new Bill will need to undergo more future amendment. If those bodies of work had have been completed prior to or concurrently with the amendment to the NDIS Act of 2013 reform would have been more meaningful and timely.

 PNSW advocates to the NDIS that 2 of the stated goal components of Schedule 2 are not adequately described in Schedule 2, the Participant Service Guarantee Rules and the Plan Administration Rules. They are:
o Strengthening the central role of people with disability in co-design
o Recognition of relationships between participants and their carers and families
 There is little information/examples/case studies on how co-design will occur and what it might look like and little information/examples/case studies about how relationships will be recognised in either of the 2 new Rules that are to support the implementation of Schedule 2
 PNSW welcomes the inclusion of Schedule 2 if in fact it actually increases interaction with people with disability in co-design and is not tokenistic about people with disability helping to design the NDIS and the role of carers and families in decision-making. PNSW requests that the NDIA demonstrates a far greater effort in the domain of co-design of the NDIS by people who actually live with disability and creating greater opportunities for people with disabilities to be employed by the NDIA and to participate in the building and ongoing review of the NDIS as a system. Greater transparency is required about how co-design will be facilitated so that there can be no perception that the idea of NDIS co-design is tokenistic.
 PNSW advocates to the NDIA that strategies such as increasing participant and carer representation on the NDIA Executive will convey a powerful message that the NDIA is truly committed to co-design.
 The mooted increased flexibility of the NDIS as set out in Schedule 2 must be based on unconditional recognition that disability is not a generalised condition and that disability cohorts such as people with Parkinson’s disease have unique and complex needs that are largely not generally well recognised by health and allied health professionals. PNSW did not support the introduction of the proposed NDIS Independent Assessment process and campaigned against it as it defeated any approach to individualisation and actually decreased flexibility by limiting choice and control to participants. The limitation would have prevented people with Parkinson’s from having their needs assessed by the healthcare professionals with whom they already had relationships and history and who understood the person’s individual needs.
 PNSW supports the increased clarity Schedule 2 will bring around eligibility criteria to reinforce that impairments resulting from psychosocial disability (or mental health condition) that are episodic, fluctuating or varying in intensity may still be regarded as permanent, and references to ‘psychiatric conditions’ will be replaced with ‘psychosocial disability’. This is a positive move to reduce perceived discrimination and lack of equity for people living with mental health problems.
 PNSW welcomes improved ability of participants to access their funded supports as proposed in Schedule 2 as it will enable the NDIA CEO and NDIA staff to responsively provide funding outside of a plan for the purpose of enabling a participant to access the supports in their plan. This will improve service support and provision to people with Parkinson’s due to the nature of progressive degeneration caused by Parkinson’s.

Establishment of NDIA process timeframes is a positive movement in addressing current cynicism about the effectiveness of the NDIA given that NDIS participants being supported by PNSW often express concern and confusion around how slow NDIA processes for access, assessment and review have been. Setting out timeframes is welcomed by PNSW providing there is a genuine individualised flexibility response when extending/changing timeframes where/as required, given the complexity of diagnosis of each person’s Parkinson’s disease and determining their unique challenges. Locating health and allied health professionals who have the necessary experience, skills and knowledge of the aetiology of Parkinson’s and a thorough understanding of how the condition impacts people both medically and psychosocially is an ongoing challenge for people diagnosed with Parkinson’s. Obtaining quality clinical assessments from suitably qualified heath and allied health professionals is challenging due to their lack of numbers and often limited Parkinson’s experience and their “thin market” locations. Many are city or coastal based and people impacted by Parkinson’s may have to travel great distances to see specialist practitioners for accurate clinical assessments.

The proposed timeframes appear to be reasonable at this time, prior to the PSG Rule coming into effect. Given the wide gamut of diverse disabilities in the community and the expert and consistent application of criterion referenced flexibility by NDIA staff in inclusively negotiating changes to timeframes with participants must be demonstrated for NDIA processes to remain transparent, inclusive, person centred and flexible. Comprehensive NDIA staff training and development may minimise the transition issues that will arise as this Rule is implemented. PNSW believes it is essential that data on timeframe related issues and process breakdowns is continuously collected and analysed to provide evidence based information that the proposed timeframes are working – or not; so that continuous improvement to the Rule can be implemented and evidenced.

Sections 5 & 6 of the PSG Rules Part 2 refer to the engagement principles to be demonstrated by all NDIA staff as being “transparency, responsiveness, respect, empowerment and connectedness”. These engagement principles could be interpreted as subjective because they are behaviours that are required of NDIA staff. To address this issue, the NDIA has introduced engagement service standards set out within the NDIS Participant Service Charter. The service standards example a limited list of behaviours under the column heading “What you can expect from us” for each of the 5 engagement principles. The point must be made that these are lists of generalised NDIA staff behaviours and it is the subjective application of these behaviours that will continue to provide uncertainty and resulting lack of consistency from one NDIA staff member to another. A process for collecting participant satisfaction on how the service standards are being met (or not) must be used to analyse and publish achievement of the goal of successful “participant engagement” so that other desired NDIA staff behaviours can be exampled. Significant NDIA investment in NDIA staff training and development will be required to facilitate a smooth transition to effective participant engagement is likely to be problematic in the short term and may contribute to ongoing participant dissatisfaction with interacting with the NDIA as the transition occurs. The question may be “How will transparency, responsiveness, respect, empowerment and connectedness be objectively measured to determine if the Service provided meets the PSG Rules?” PNSW believes that the impost of a set of participant service standards does provide a set of guidelines for how participants engage with NDIA staff but it may be perceived by some participants as “additional red-tape”.

PNSW considers that this is a positive accountability measure that will be welcomed by service providers and participants and raises the issue of effective communication of Annual Ombudsman Report outcomes to participants. There must also be a provision for participants to comment on report outcomes so that evidence of participant engagement and co-design is seen.

 PNSW is concerned that more information may be required around how criteria for how often a participant needs/may need to have an assessment of their functional capacity where their circumstances may not have significantly changed will be determined. What are the timelines?
 The short period for public feedback on the new legislation contradicts the government’s apparent commitment to co-design and may be perceived as an electioneering strategy which may raise questions around the efficacy of the consultation process and depth – especially for opportunities for participants to provide feedback.
 Though it is good that Schedule 1 and the PSG Rule have a focus on facilitating timeliness in planning and amendments and reviews to plans – the focus must not remain on timeframes. It must be supported by a high functioning and trained professional NDIA workforce that understands that application of timeframes must occur within an engagement context of the promised “transparency, responsiveness, respect, empowerment and connectedness.”
 Part 3 of the Rule – “Timeframes and related obligations” contains clear information relating to NDIA process timelines under various circumstances under sections:
o Section 8 – Plans – approving a statement of participant supports in a plan
o Section 9 – Plans – assistance to implement a plan
o Section 11 – Access and plans – giving effect to certain AAT decisions
o Section 12 – Periods for cancelling appointments of nominees
o Section 13 – Reviewing decisions – period for giving reasons for a reviewable decision
o Section 14 – Reviewing decisions – period for reviewing a reviewable decision
 However:
Relating to Part 3 Section 10 – Plans – reassessments and variations.
The NDIA must ensure that clear and decisive communication and extensive education is provided to participants, NDIA staff and the sector generally around the newer definitions and application of the of the terms:
o Reassessment
o Variation
o Review
 Under Part 5 of the Rule – “Application and transitional provisions”:
PNSW advocates that transition to and application of the Rule will be a complex and challenging process for both not-for-profit service providers such as PNSW and participants. It will require resources to implement new processes, systems and education for PNSW NDIS team members. It will also be a challenging process to communicate the introduction of the Rule to existing NDIS participants and require development of new resources for on-boarding new NDIS participants. People impacted by Parkinson’s are often cognitively impaired, very stressed and require much support to navigate and understand the NDIS. The NDIA must recognise that if implementation is at least co-resourced by the NDIA with service providers then the transition is more likely to be a seen as a positive experience for both service providers and participants.
 The “Explanation of the National Disability Insurance Scheme (Participant Services Guarantee Rules 2021) Guide effectively communicates explanation of the Rule and may be one useful resource for upskilling service providers to transition their staff and processes to implementation of the Rule.

In relation to Section 10 – Variation of participant’s plan on CEO’s own initiative: PNSW has concerns that the NDIA CEO and delegated NDIA staff will be given the broad power to vary a participant’s plan on the NDIA CEO’s or NDIA staff member’s own initiative. The example provided in the Rule talks to one example of correcting a technical mistake in a plan. The scope of 9 other approved NDIA variation initiatives is set out in Section 10(2) but there is no limiting statement about where the extent of the initiation powers of the NDIA CEO or NDIA delegated staff member will end. Further guidelines may be necessary to ensure that the discretionary power of the NDIA staff cannot be seen as or perceived as discriminatory or prejudiced against a participant. Consistency in the application of plan variation activities will be undertaken by diverse NDIA staff that may not have an understanding of the nature of a participants’ disability or the extent to which they may require plan variation to provide “necessary and reasonable” supports.
In relation to Section 11 – Variation etc. of participant’s plan at participant’s request: PNSW welcomes increased opportunity to proactively facilitate plan variation of a participant’s plan at the participant’s request. However to communicate this to the over 400,000 existing NDIS participants with an already approved plan requires significant sector investment in providing education and information to participants and providers about this. In the case of upskilling providers, capacity building funding needs to be provided by government – possibly aligned with the ILC initiatives but excluding the competitive tendering aspect.
In relation to Section 12 – Reassessment of participant’s plan: PNSW draws attention to the feedback provided above in relation to Section 10 and PNSW has concerns that the decision making process by NDIA staff to reassess a participant’s plan may not be consistent, fair and transparent and could be seen to be discriminatory.

PNSW has concerns that the changing nature of the NDIS system as it evolves and develops is in itself often perceived as a barrier for participants to have confidence in the NDIS. PNSW NDIS participant feedback indicates that there is a culture of “overwhelm” when it comes to them understanding how to interact with the NDIA. Change and transition in any system must be well planned and resourced if it is going to succeed as opposed to creating confusion. PNSW has of its own volition resourced the provision of the PNSW InfoLine and employed an NDIS Advocate to provide support and education to participants as they cope with cognitive deterioration and confusion about what to do to get the best results from their NDIS plan. The options for participants contained within sections 10-12 may be apparent to some people who do not have a disability but they will need to be communicated to participants so that they understand what the options are and what they may mean for them personally. Significant investment in education support and production of explanatory resources will be required to facilitate this. Sector development funding will be required to facilitate achievement of the Plan Administration Rule.

In relation to Section 5 – Funding to persons or entities: PNSW welcomes the inclusion to the rule relating to more flexibility for the NDIA to fund early intervention and ancillary supports as it attempts to evidence equitable proactive person-centred responses as the circumstances of a participant’s life change. The Rule requires an explanation as to how the “NDIA must also consider whether providing funding to the person or entity would promote the diversity and sustainability of the NDIS market at the location where the participant lives”. PNSW is concerned that many people living with significant disability in rural and remote locations will not in fact be able to access supports due to the chronic “thin market” issues that have been identified. Thin markets as we know actually reduce participant choice and control thereby undermining the NDIA intent to “maximise choice and control”. Section 5 of the Rule will only be achievable if the NDIA addresses the thin market supply in relation to providers of support for all people no matter where they live. This is a significant national issue for people living with Parkinson’s as their needs are complex, changing and degenerative and there is a great lack of qualified professionals away from larger cities and towns to provide quality targeted clinician supports to them. PNSW believes that the thin market issue may defeat the achievement of Section 5 and create further inequity and lack of confidence in the NDIA. Section 5 also requires clearer guidelines for how the NDIA staff will equitably determine/calculate participant “urgency”.

In relation to Section 9 – Acquittal of NDIS Amounts: The Rule clarifies and strengthens accountability in that a person who receives an NDIS amount on behalf of a participant must spend the money in accordance with both the participant’s plan and the participant’s requests. PNSW welcomes the increased accountability of providers for this including retaining records and for a specified period of time. However, this may well add a new or deeper layer of unfunded administration/overhead to be resourced by the provider in a market where NDIS prices are fixed and regarded generally as insufficient for the provision of good service. One risk/potential issue will be that this will be an increased financial administration burden on providers and may cause shortcutting on service delivery or encourage providers to leave the market. Increasing participant record keeping requirements and guidelines may also be seen as unfairly challenging to many participants to manage their affairs and have record keeping systems in place

 PNSW believes that greater definition, clarification and education case studies/examples will be required around communicating what criteria constitutes a:
o Plan variation – is this a slight change to an existing plan that does not involve creating a NEW plan? If so, the criteria that define a “change” must be clearly communicated to providers and participants. The criteria for a plan variation to be appealed or reviewed so that the participant can be guaranteed that the process is objective must also be clearly communicated and understood by providers and participants?
o Plan reassessment – does this trigger the completion of an existing plan and the triggering of a new plan to be developed? It must be made clearer what happens in the time lag between the ending of a plan and the finalisation of the new plan. Security needs to be ensured so that the person is not “plan-less” for an intervening period.
o Plan review – Clearer guidelines may be needed to identify if this is a review of a decision in a dispute? What are the defining criteria?
Possibly providing examples or case studies of each example may assist the messaging.
 The Plan Administration Rule sets out that participant plans can be revised by an initiation by the NDIA or the participant. Additional clarification is possibly required around the circumstances under which the NDIA may initiate a review. There is a risk that participants may see this as being the opposite to the idea of co-design and sensitive consultation with participants will be required so that there understand what changes the review is required to accommodate. Many people do not trust the NDIA to act completely in the interest of the participant. Consider providing more examples/case studies that may trigger an NDIA triggered Plan review and putting in place a clearer review process and timeline.
 PNSW recognises that The Plan Administration Rules attempt to provide participants with clarity on how NDIS amounts for reasonable and necessary supports will be paid but is concerned that reforms are yet to be completed around clarification about what constitutes “reasonable and necessary” supports. The ongoing lack of clarity around the definition of reasonable and necessary supports may continue to make it difficult to understand/determine the cost of those supports so that they can be paid for by NDIA.
 In relation to Rule Section 7 – Manner of paying NDIS amounts: PNSW supports the provision in the Rule for the manner of paying NDIS amounts but we do anticipate that where NDIS funds are paid to the participant’s account in instalments that this may be a burdensome and unreasonable impost for the participant to focus on accounting rather than living well.

None in addition to the comments provided