Senate Standing Committee on

Community Affairs – Inquiry into the National Disability Insurance Scheme Amendment ( Participant Service Guarantee and Other Measures ) Bill 2021 Submission by the Summer Foundation

November 2021

Contact: Amelia Condi Head of Government Relations and Policy

Summer Foundation Ltd. | ABN 90 117 719 516 | PO Box 208 Blackburn VIC 3130 | T +61 3 9894 7006 | E: policy@summerfoundation.org.au

www.summerfoundation.org.au

Introduction

The Summer Foundation welcomes the opportunity to contribute to the Senate Community Affairs Legislation Committee’s inquiry into the National Disability Insurance Scheme (NDIS) Amendment (Participant Service Guarantee and Other Measures) Bill 2021.

The Participant Service Guarantee (PSG) and Other Measures implement many of the recommendations from the 2019 Tune review. This is despite a promise for transparency, empowerment, and co-design within the legislation, proposal shows a notable lack of engagement with people with disability and the disability sector.

“It’s just, um, it’s a such a funny thing that [the NDIA] could do the exact opposite, in asking for input on [changes to the NDIS].”

Rachel* – Participant

The introduction of the PSG Rules into the legislation provides participants with greater confidence and clarity by simplifying procedures for NDIS Participants (participants) and prospective participants as well as removing known barriers. It is intended to “substantively improve the experience of current and prospective NDIS participants.“1

Within the National Disability Insurance Scheme Amendment (Participant Service Guarantee and Other Measures) Bill 2021 (the Bill), the PSG Rules:

• Establish new standards and greater flexibility
• Allow the National Disability Insurance Agency (NDIA, Agency) to make quick Changes through plan variations
• Ensure timeframes for participants and prospective participants regarding planning and information requests
• Ensure participants are provided reasons for reviewable decisions
• Ensure that Administrative Appeals Tribunal (AAT) reviews of either statement of participant supports, or variation of statement of supports, will include all current and future decisions by the Agency around related matters
• Establish the criteria for an annual report by the Commonwealth Ombudsman to the Minister of the NDIA, demonstrating how the NDIS is being delivered against the PSG.

Within the Bill, Other Measures:

• Acknowledge importance of co-design with people with disability
• Clarify eligibility criteria around psychosocial disability.
• Increase protections for people wanting a registered plan management provider
• Provide simplified, direct payments from the Agency, on behalf of participants

The Summer Foundation has commented on the relevant areas in relation to our work and the experience of the cohort of people with disability who we assist.

1 Parliament of Australia, House of Representatives Explanatory Memorandum: “National Disability Insurance Scheme Amendment (Participant Service Guarantee and Other Measures) Bill 2021, p.4.

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Part 1 – Participant Service Guarantee Rules

1. New standards and greater flexibility

The new standards provided for in the legislation enhance confidence, transparency and provide assurance to participants that their goals are considered in plan variations. Furthermore, it aims to standardise planning timeframes for NDIA decision-making.

Further work regarding the interpretation and implementation of the PSG Rule is essential to significantly improve transparency of decision-making, communication and explanation of decisions. The PSG Rules require a level of flexibility in the way they are implemented in order to meet the needs of each participant.

Recommendation 1:

The NDIA must ensure that participants and their decision-supporters are provided easy-to-access and understandable information regarding end-to-end timeframes for each part of their planning journey. These must be relevant to the individual, providing comprehensive timelines inclusive of timeframes from submission of a request for planning to purchasing of supports.

The PSG Rules engagement principles consist of:

• Transparency – clear, accurate, consistent and up-to-date information about the NDIS participants’ plans, and the funding allocated for the purposes of their plans and supports Note: We’d like to see peer-led information and participant-led videos added to this.
• Responsiveness – Participants’ independence is maximised by addressing their individual circumstances and needs
• Respect – Participants are valued, listened to and respected
• Empowerment – Participants are empowered to make access requests, navigate the NDIS system, participate in the planning process and purchase supports under their plans
• Connectedness – Barriers are removed so participants are connected to the services and supports they need. Information in participants’ preferred formats

“Information is often difficult to understand. So the jargon, jargon is one of the things that government departments love…. [Information] shouldn’t be limited, it should be easy to understand, and clear. And I think they have to make sure that everyone gets access to it. I don’t know how they do it. But that’s their responsibility, that people have to be able to find it. I think if they’re going to put things on their website, it has to be easy to find. It has to be user friendly.

You’re often dealing with elderly people who have children that have had disabilities all their life, and they’re still looking after them and worrying about them. And, you know, they’re trying to deal with a system that they’re not really used to being older with computers and things. So, you’ve got to make everything simple. I think that’s really important.“

Clarice* – Mother of participant

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While these are positive principles, participants feel that they should be taken a step further.

“And there needs to be a bit of trust as well. I think trust should have put that in there about the standards and things too. I think trust is another important one that you don’t see. Anywhere. It’s not written there that trust.”

Claire* - Participant

One participant gave the following example of poor service, despite the Participant Service Guarantee being in place for some time.

“After my wheelchair broke down on the street, I rang [the NDIA], I thought I’ll ask them while it’s fresh in my mind I’ll ring them, and asked them how it’s going. And, I rang and I got a person who was just so unengaged. So disinterested.

[Some organisations] do train for it, all employees get told the ethical standards and the engagement standards and all that sort of thing. You know it’s no coincidence that everyone says, “Have a good day.” It’s, I mean, this stuff could be done.”

Rachel – Participant

2. Allow the Agency to make quick changes through plan variations Plan variations present a much-needed change for participants needing to make minor or technical changes such as requiring emergency funding, changing plan management type, minor changes to support, or implementing AAT decisions. This will be particularly useful for participants who need assistive technology or home modifications, as well as for participants with high and complex needs. Plan reviews and reassessments will remain for all larger decisions.

Section 47A clarifies that during both variations and reassessments, the participant must be involved and that variations must be for the benefit of the participant. This will provide assurances to participants (and providers) that changes of circumstances will not negatively affect existing funding and supports.

Participant perspective is central to any variation, review or reassessment of plans. A participant centred approach must be prioritised and always be taken to ensure a meaningful approach to planning.

“Participants must consent to all variations so we have more control over our own plan and therefore our own lives.”

Daniella – Participant

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“The stroke of the NDIA pen can change a participant’s life. There needs to be some consideration shown towards them, after all the NDIA is supposed to be about improving the lives of people with disabilities not punishing them for having a disability, which sometimes seems the case.”

Clarice – Mother of participant

The PSG Rules will require the CEO to consider a broad range of circumstances (Section 33(5)) for the benefit of participants when making reassessments, including the participant’s tatement of goals and aspirations, regard to reasonable and necessary supports (Section 34), and regard to the participant managing their plan to the extent that they wish to do so. Subsequent reviews of the NDIS’ performance against the PSG Rules must demonstrate that variations and reassessments are indeed wholly beneficial to participants.

3. Timeframes for participants and prospective participants regarding planning changes and information requests

The PSG Rules provide timeframes for processes and decision making. Reporting on adherence to timeframes, timeframe end-to-end ‘actuals’ and compliance must be made publicly available to ensure transparency of NDIA operations and to build confidence in the NDIA. The NDIA must ensure that participants, close others and their decision-supporters have easy-to-access and understandable information regarding specific timeframes for each part of their planning journey.

“I never get any clear timeframes or an indication of when things will be approved or decisions made or when I can expect them, so I just wait and am surprised.

My wheelchair quote was passed quickly, but I had no idea how long the decision would take.

My SDA decision took months and I had to wait and wait and hope that it would happen eventually without any certainty.“

Daniella* - Participant

Recommendation 2: The NDIA must report its performance against timeframes, as well as timeframe ‘actuals’ (the end-to-end timeframe). These must be made publicly available and accessible in formats that are preferred by participants.

The NDIA Home and Living Panel’s current service level standard is quite responsive, set at 10 days. Yet this timeframe is only representative of the panel’s process rather than being responsive of the participant’s experience. It does not include:

• the time from which the first application/request for home and living supports is submitted
• the time after the panel’s decision is made and is communicated to the participant

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c) the time required for home and living supports to be included into a participant’s

plan for use.

Timeframes must include the full planning process as it is experienced by the participant.

The PSG Rules subsection 8(2) allows timeframes in subsection 8(1) to be paused if the CEO requires the participant to provide further information.2 This provides the NDIA opportunity to pause timeframes at their preference and does not require any consultation, gagement or consideration for the needs of the participant. Timeframes should only be paused where there is agreement between the Agency and the participant for an agreed purpose. And only in the circumstance where there is suitable funding in place to support the participant during the period which has been paused. It is the NDIA’s responsibility to ensure participants are safe and able to access the supports they need – this responsibility is not put on pause for a decision to be made.

Recommendation 3: The Agency must ensure no participant is worse off due to a pause in decision making and must report on the frequency and length of pauses in decisions. This data must be made publicly available to participants to give a more complete view of timeframe actuals.

Considering current benchmark timeframes for the Home and Living Panel of 10 days, for SDA and housing related supports, significant work and streamlining of processes are

redacted

“The timeframe remains paused until the CEO’s requirement is complied with. When the CEO’s request is complied with, either the initial period resumes, or if less than 14 days remains on the initial period, the initial period is extended to give the CEO 14 days to make the decision.” Explanation of the National Disability Insurance Scheme (Participant Service Guarantee) Rules 2021, p7.

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required to be implemented to achieve 28-day timeframes as committed to by the PSG. Currently, the majority of Home and Living decisions are taking up to, and more than 90 days, or three months, often with the participants and their supporters chasing a decision.

Recommendation 4: Timeframes must be end-to-end inclusive, from initial request and provision of evidence to the point in which the decision is communicated and a participant is able to commence utilising their funding. Monitoring and reporting of timeframes must be transparent and made publicly available.

Participants require access to plans which support their needs. Where a participant needs to wait for approval of more complex funding line items, the majority of the plan should be made available within 28 days and the additional decision-making should occur as soon as practical thereafter.

For example, participants with complex needs, especially those requiring complex assistive technology or home modifications, should not have their full plans delayed while a decision is to be made on a complex item or support.

“First and foremost, if the ‘complex’ request is contingent on ‘safety’ then an alternative support source should be implemented while the request is being investigated. This hopefully ensures that the person is safe while waiting on this item, mechanism or service required to improve their safety.

For example, if the person was waiting on home modifications, again for crucial safety reasons, then they should be offered some interim accommodation while the decision is being made. Alternatively, additional in- thework supports should be implemented into their current plan, while awaiting an outcome.“

Claire – Participant

Recommendation 5: Planning consideration for complex services or supports or that require funding approval from a delegate other than a planner, should not result in longer timeframes (i.e., 50 days per 47A(3)(a)(i)) for straightforward components of the plan.

4. Provision of reasons for reviewable decisions

The Summer Foundation is pleased to see that participants and prospective participants are being empowered to request an explanation of a wide range of reviewable decisions. This greatly furthers transparency and accountability.

However, an NDIS operating in a transparent and respectful way would make this available up front and without request. This will ensure that participants and their close others have the information they need in considering options.

5. AAT reviews of either statement of participant supports, or variation of statement of supports, will include all current and future decisions by the Agency around related matters.

The AAT will have access to current and future decisions by the agency to review either statement of participant supports, or variation of statement of supports, including current and future decisions by the Agency. This ensures that any future review by the AAT have more comprehensive information on the participant’s plan.

Where participants are seeking review by the AAT, often lead times are extensive and clarification of process is challenging to understand. The NDIA must support participants to understand the AAT review process and be supported to access avenues for support.

There is a current trend of AAT reviews being settled by the NDIA in the days leading up to the AAT hearing. While this results in the right outcome provided for the participant, it comes with a significant delay is access to funding and support required and the additional burden of stress caused by the process. As a result, there is no clear and transparent mechanism for AAT reviews to set precedence for other participants seeking reviews.

Recommendation 6

That the NDIA, where possible:

a) works with participants to address requests for reviews in a timely manner b) support participants to understand the AAT review process c) provides outcomes of settled cases ahead of AAT hearings to AAT and provides these in a public record, just as cases heard at the AAT are publicly recorded

6. The criteria for an annual report by the Commonwealth Ombudsman, demonstrating how the NDIS is being delivered against the PSG.

Participants, close others, carers and organisations within the disability sector should have an opportunity to engage with the Commonwealth Ombudsman to discuss their experiences.

Regular consultations between participants and the Commonwealth Ombudsman would form a proactive approach to seeking feedback and clarifying the level of service being received by participants. Information about how participants can contact, engage with and provide their feedback to the Commonwealth Ombudsman must be made available, and in ways that best support the communication needs of participants.

This should, in turn, inform any refinements required of the PSG Rules, including its implementation and the practices which it underpins.

Access to the Commonwealth Ombudsman by participants must be easy, approachable and available in a way which best supports the needs of each participant. Likewise, communication about and from the Commonwealth Ombudsman for participants must be available in easy-read formats, through participant-led forums and other accessible communication channels.

Recommendation 7: Complaints and feedback about the PSG Rules, directed either to the NDIA or Commonwealth Ombudsman, must directly contribute to participant-focused improvements to the implementation and processes which underpin the PSG Rules.

a) Participants must be able to provide constructive feedback and lodge complaints b) Feedback and complaints must be incorporated into the regular review and continuous improvement of the PSG Rules and their implementation.

Recommendation 8: The Commonwealth Ombudsman should provide public reports and recommendations about the service level quality which enables continuous improvement and increased quality for participants.

Schedule 2: Flexibility and Other Measures

7. Acknowledging importance of co-design with people with disability

Schedule 2 acknowledges 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. This is in line with Article 4 of the UNCRPD and speaks to the Australian Government’s obligation to consult with and actively involve people with disability in the development and implementation of policies and decision-making processes.

Co-design comes in many different forms. The legislation has not specified how this will come about.

“How does a giant bureaucracy with, run by politics at the top, and the everyday needs of people with a disability…do co-design?

Claire – Participant

“When you get a lot of problems, a lot of people say, you know, there’s no communication. People are not listening. They’re not understanding that. You know, that’s a huge one to start. And that’s a very important part of design. I think, and I need to understand it’s about education. Again, it’s about attitudes, attitudes, and how perceptions.

Rachel – Participant

Additional to co-designing all materials, they should be provided in accessible and easy to understand formats including participant led videos. This will enable participants to access and be informed by the material provided.

“These principles should meet my standards [needs], but I don’t believe they will, because I have a different situation as the owner of an SDA property and a participant. Not many people are both and the NDIA has no standards for this small cohort and we are put in the too hard basket and pushed aside. For example, I have to meet the safety assessment standards with the NDIS Commission that apply to investors and each year try to get information on this with little help. I have been released from this for a year, but every year I have to follow up again with no contact. There is little help for people who fall between the cracks and this is not addressed.

Daniella* – Participant

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8. Clarification eligibility criteria around psychosocial disability

People with psychosocial disabilities have faced challenges in accessing the NDIS due to lack of clarity around whether psychosocial disabilities were to be considered as permanent and life-long disabilities. It is great to see further clarification around psychosocial disability, as well as terminology transitioning from ‘psychiatric condition’ to ‘psychosocial disability’.

There is a lack of clarification around impairments to which a psychosocial disability is attributable, as well as the Becoming a Participant Rules Section 8(2)(a)(i) which states that “the person is undergoing, or has undergone, appropriate treatment for the purposes of managing the person’s mental, behavioural, or emotional condition”. There is a lack of clarity on how a participant is able to provide satisfactory evidence for the NDIA. The lack of clarity enables varied and flawed interpretation which may lead to the exclusion of people with a disability from the Scheme.

“Right before they were ready to roll that NDIS, they added in psychosocial disabilities and it was really designed around physical, intellectual brain injury, etc, etc. And like I said at the last minute they added it in, so I don’t think they ever really got their head around it.”

Rachel – Participant

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Increased protections for people wanting a registered plan

management provider

The legislation ensures that participants who request to plan manage their NDIS funding are subject to the same considerations as participants who self-manage. Yet the legislation focuses upon disqualifying criteria, with the participant needing to demonstrate their ability to self-manage. Rather than trusting the judgement of a participant or having a focus on building the capacity of participants and their decision supporters to self-manange.

Moreover, in conjunction with Schedule 2 (Flexibility), participants should be in control of who receives their planning funding, whether it be themselves, a supporter, a provider or a combination of these. The Summer Foundation sees potential for unintended consequences in Schedule 2 Section 45(1)(a) which places control over funding in the hands of the CEO, rather than participants and their designated plan manager, despite arrangement for plan management. Participants must have full control over funding.

• Recommendation 9: Section 45(1)(a) must allow participants to determine who receives funding through their plan.

Additional Comments

The ultimate test of the quality of this legislation will come down to how the NDIA and the NDIS Quality and Safeguarding Commission (NDIS Commission) implement and uphold the legislation. The interpretation and operationalisation of the proposed changes to the legislation are critical in ensuring a successful NDIS for all participants.

There has been no indication of how this will occur in the explanation documents provided alongside the draft legislation. This raises many questions of the changes which will emerge as a result of this legislation.

About the Summer Foundation

Established in 2006, the Summer Foundation works to change human service policies and practices related to younger people (18-64 years old) living in, or at risk of entering residential aged care facilities.

Our Vision is that younger people with disability and complex support needs live where and with whom they choose, with access to high quality housing and support options that enhance health, wellbeing and participation.

Our Mission is to create, lead, and demonstrate long-term sustainable systems change that stops young people from being forced to live in aged care because there is nowhere else for them.

The Summer Foundation has worked extensively with people with complex disability support needs to ensure they have access to all the NDIS supports essential to living the life they choose. A person-centred Home and Living Policy is critical to achieve the targets of the Younger People in Residential Aged Care Action Plan (2025).

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