NDIA Accountability Project

Submission regarding sister's intellectual disability and NDIA interactions

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Submission to the Joint Standing Committee on

the National Disability Insurance Scheme

Inquiry into the Capability and Culture of the

National Disability Insurance Agency (NDIA)

14 December 2022

Introduction

Thank you for the opportunity to share our views with this Inquiry.

We represent and act on behalf of our sister who has had an intellectual disability (ID) since birth. We base this submission on our interactions with the NDIA since 2017 which have included:

  • 6 x planning meetings with Local Area Co-ordinators (LACs)
  • 2 x submissions of Change of Circumstances forms
  • 2 x complaints
  • 1 x request for Internal review of a decision
  • 1 x AAT application over 8 months and 2 case conferences
  • 1 x plan renewal phone call (although this was not a planning meeting, it did result in our current plan)

Our submission is in two parts:

  • Part A (2 pages) provides a summary of our high-level views on the NDIA capability and culture based on our interactions with the organisation.

  • Part B (4 pages) highlights the impact on the participant experience. This is a copy of a letter written two weeks after the conclusion of our 8 month long AAT experience. It was requested by the advocacy organisation who supported us throughout the process, as they were involved in a forum that was seeking to understand the impact of the AAT process on participants and their carers. We thought this may be relevant to this submission as it gives a stronger sense of the emotional impacts on the participant and carer experience, however we acknowledge that it contains many of the same points as Part A of this submission.

PART A - Our high-level view on NDIA capability and culture

Based on our interactions we have formed the following views regarding the NDIA capability and culture:

  • The organisation is inconsistent and untrustworthy. On the rare occasion you are permitted to have a conversation with a real person, e.g. with LACs during the planning process or a complaints officer - they may (or may not) express sympathy for your situation. Unfortunately, we have learned from multiple interactions that what they tell you is likely to be at odds with what the organisation then decides and does. Actions speak louder than words and unfortunately we can no longer believe the words we hear from a real person representing this organisation.

  • The organisation does not engage in open, honest, two-way communication. The regular email newsletters stress how open and welcoming the NDIA are to getting participant feedback through various research activities. However when communication with participants matters most - e.g. when trying to understand the rationale for their decisions or why submitted evidence is deemed insufficient, or whether an honest mistake has been made, there is no opportunity to speak with the actual people involved.

  • The organisation does not provide sufficient guidance on what evidence is required. Having provided 3 assessment reports by Occupational Therapists (OTs) and being asked to provide a fourth, we sought to clarify what information was missing from the existing reports. It seems that the NDIA provides little guidance to OTs (and potentially other allied health clinicians) as to what information is required in assessment reports e.g. commentary about why lower cost alternatives are not suitable. On another occasion we asked what evidence was required to demonstrate that in addition to her intellectual disability, redacted has physical/mobility impairments but this question could not be answered by NDIA representatives.

  • The organisation does not genuinely support people with disabilities and their carers. As an insurance scheme, the NDIA is all about money and business goals e.g. fostering a new industry of providers, distributing funds to those who can put the best business case forward. Our experience is that if you can’t show there will be a return on the investment (i.e. capacity will improve) you’re unlikely to receive funding. Just like any business, if you don’t use all your funding one year, for reasons that can clearly be explained,you won’t get that funding again the next year.

  • There is little understanding that the needs of people with disabilities and their carers are much more fundamental. We need:

  • Trust in the people and organisations we engage to help provide care and support to some of the most vulnerable members of our community. Hint: it’s not reasonable to expect a participant with cognition, communication and continence issues to transition to a shared living arrangement with complete strangers within a 12 week timeframe.

  • Continuity of conversations and care. Participants and their carers shouldn’t have to start every interaction with an NDIA representative by reiterating details of their capability and capacity, when the information has already been provided.

Having to repeat a participant’s developmental history suggests the NDIA has not heard, listened, recorded or communicated information appropriately. While conversations shouldn’t start with a regurgitation of what is on the participant’s file, NDIA staff should be supported by internal systems, processes and training to ensure they prepare for conversations by reading pertinent information and then making informed and sensitive observations. Seeking clarification in a non-confrontational manner is important, particularly if observations and interactions don’t appear to match recorded information.

  • A system of funding that is not based on expectations of either capacity improvements and/or economic contributions to the community. It is a fact of life that as people get older their capacities decline and care needs significantly increase rather than decrease.

This system needs to prioritise our most vulnerable participants regardless of whether their capacity is likely to improve, decline or remain stable. Thankfully with the right support many participants will see improvements in their quality of life. However those who require more care should be prioritised rather than penalised.

  • Less stress - full stop!

PART B - Impact of the NDIA culture has on the participant experience (i.e. copy of letter after AAT experience)

                                                      13 September 2022

To members of the Advisory Forum,

We, the family of wish to share our recent experience with the NDIA and Administrative Appeals Tribunal (AAT) processes. It is our hope that you can make improvements to this broken system that is continuing to crush the spirit of those of us in need.

On behalf of our beautiful sister, who has had an intellectual disability since birth, we have found ourselves struggling to make sense of the NDIA actions and battling to feel any hope for her/our future.

We have recently “withdrawn” our appeal with the Administrative Appeals Tribunal (AAT) of an internal review decision made by the NDIA last December and while people who look solely at statistics may assume we must be celebrating some sort of ‘victory’, this is far from the truth.

The only reason we have withdrawn our appeal is because a new plan was issued with the funding we require for the next 12 months, despite us being repeatedly told that a participant’s file cannot be touched once they are part of the AAT process. Once the new plan was in place, discussions about the previous decisions were considered moot and so we are left knowing that our war is far from over, both sides have merely retreated to re-group and prepare for the next battle.

It may sound melodramatic to invoke analogies of warfare, or be considered poor taste given the real wars currently raging in our world, however we seek to convey two points:

  • The NDIA has chosen to make the process adversarial by engaging lawyers and hiding behind legislation, rules and operating guidelines rather than being willing to engage in any form of direct human conversation or collaboration.
  • The resulting emotional toll on participants and their families is deep, dark and despairing.

So what’s the issue at hand?

  has been living independently with supports in her own 2-bedroom unit in Bendigo since 2017. Despite a March 2021 NDIS plan acknowledging that        support needs had increased and she now requires overnight support, 7 days a week (in addition to the support she requires for her day-to-day activities), the resulting plan did not include sufficient budget for this support.

By October 2021 the NDIA view had changed to insist transition to a ‘shared model’ of support within 12 weeks, despite us repeatedly outlining why this is not appropriate - and completely at odds with her stated Participant Goals as well as the NDIA Principles.

Operational Challenges within the National Disability Insurance Agency (NDIA)

The litany of contradictory messages, events and interactions with the NDIA from the March 2021 plan onwards are too many to outline in this letter. We would be willing to share the details should you have any interest in them, but for the sake of brevity, we suspect everyone at this forum is prepared to concede that operational challenges exist within the NDIA that directly contribute to participants, and their families, having stressful and unsatisfactory experiences.

Beyond the improvements needed to the organisation (including to its processes, culture and staff) we strongly believe changes are also needed to improve the underlying legislation and rules. Not being lawyers, we are unsure as to whether it’s the legislation and rules themselves that need to change, or just the interpretation of these by the NDIA (e.g. in their operating guidelines and other non-transparent internal processes).

Here are the top 3 things we believe need to be addressed, based on our recent experience.

1: Remove the ageism embedded in the ‘Value for money’ assessment criteria

Clearly ‘Value for money’ is the criteria causing headaches for most participants, so more work needs to be done to clarify and communicate how this is defined and assessed.

The notion of investing funds to reduce other support needs in the future is understandable from an early intervention standpoint, but none of the criteria in Rules 3.1(a) – (f) amplifies the fundamental truth of human existence - i.e., as human beings age, our condition deteriorates and the need for support is more likely to increase than decrease.

For many people with disabilities, especially those over the age of 50, placing an expectation into the minds of assessors that current funding is only value for money if it reduces the need for future funding [refer to Rule 3.1(c)] is blatantly ageist and goes against the natural human condition of ageing.

Adding to the confusion of what ‘value for money’ means, parts (a) and (b) of Rule 3.1 refer to “outcomes” but provides no clarity on what these outcomes are - leaving them open to subjective interpretation. For example, in the context of supporting a participant to live independently in their own home:

  • Does the “same outcome” referred to in 3.1(a) simply refer to providing a roof over head, or does it extend to her having a private, safe space that she feels comfortable in and is able to host family members and/or support workers as she chooses?
  • What specifically are the “life stage outcomes” referred to in 3.1(b)? Without these being defined/available to participants, how can we be expected to provide evidence that these will be substantially improved?

We note that in the Statement of Issues provided for our second case conference the NDIA was simply able to declare that SIL or ILO “will increase the Applicant’s independence while substantially improving the life stage outcomes.” However they could not however explain to us what these outcomes were, their evidence base

The NDIA’s ability to randomly replace plans destroys trust and credibility

Operational guideline 5.7 “Can a participant’s plan be varied?” states “The NDIA may conduct a review of a participant’s plan, or a participant may change their statement of goals and aspirations at any time, both of which result in the existing plan being replaced with the new plan.”

This guideline strikes fear into the heart of every family who has struggled through the planning process to get their funding approved. At our case conference when we sought reassurance that our new, unexpected plan would be honoured for its intended duration, we were told no assurance was possible as circumstances may change in future. We were told it would be extremely unlikely for NDIA to instigate a review, however we had also previously been told that our plan/funding could not be touched while we were in the AAT process, so how can we have any trust in what the NDIA say?

Allowing the NDIA to instigate plan reviews at any stage completely undermines principle 1.4 (c) that “families and carers should have certainty that people with disability will receive the care and support they need over their lifetime?”

Reset your purpose & goal – i.e. be a support agency

From its outset the NDIA had a bold vision and is based on important principles such as inclusion, choice and control. Unfortunately, the primary goal of providing support for people with disabilities seems to have become lost among other priorities such as incubating industries and establishing/managing/protecting a fledgling agency during political storms.

While the agency/scheme was set up to provide funding for participants to use as they choose, many people have needs beyond money. Fundamentally people need services and people they can trust to deliver quality care. Leaving this latter part in the hands of the private sector has only created:

  • An uneven distribution of services, with people in the usually disadvantaged areas missing out on vital support.
  • More distrust as service providers continually fail to meet expectations,
  • A paradox of choice - i.e. giving people too much choice can lead to information overload, poor decision making and stress.

No organisation wants to be accountable for the mistakes and accidents that will inevitably happen as part of disability care, but accountability is the missing ingredient in disability support. Only by being honest and transparent about mistakes can organisations improve.

Rather than lamenting how far the NDIS has deviated from its original intent and trying to re-create that, we urge you to take an honest look at past failures as learning opportunities and make bold new choices to help the NDIA become an agency that genuinely supports people with disabilities and their carers.

Thanks for reading/listening and should you want more information about our experience and ideas for improving disability services in Australia, we are willing to assist.

Regards,

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