NDIA Accountability Project

Addressing NDIS support for participants facing end-of-life care

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Only About Quality

ABN: 81620379188

8 November 2021

NDIS Act Review Committee GPO Box 9820 CANBERRA ACT 2610

Only About Quality Pty Ltd and its Director, Kathy Rees, welcomes the opportunity to provide a submission for the National Disability Insurance Scheme Participant Service Guarantee. This submission focuses on the opportunity to ensure that participants and their family carers are assured of respectful and timely support, not only to achieve and live a good life but to also experience a good death when this occurs. The importance of being able to vary a participant’s plan to accommodate changed circumstances during an often very stressful time in the end-of-life period cannot be underestimated. The submission also includes an expression of concern about the limited consultation period for proposed changes within this Bill.

This submission is being written from the perspective of Kathy Rees’s longstanding auditing background, inclusive of NDIS Lead Auditor responsibilities, as well as from her lived experience and perspectives from being a parent of a severely disabled woman who passed away in June 2021.

Only About Quality Pty Ltd provides commentary about auditing in general as well as calling for auditors to bring more skills and strengths to the auditing field. Only About Quality’s vision is to create courageous, effective human service organisation transformations.

Thank you for accepting this submission. For further information, please contact Kathy Rees on or via email to

Yours sincerely,

Kathy Rees Director Only About Quality

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Recommendations

Recommendation 1:

The NDIA provide extensions for people involved in and/or experiencing end-of-life situations to submit to the public consultation.

Recommendation 2:

The scope of matters that can be considered by the CEO and/or their delegate when deciding to vary or reassess a participant’s plan should be limited, with transparency regarding appropriate options being made to address a range of different circumstances such as those involving during palliative and end-of-life care.

Recommendation 3:

Participants should be made aware of proposed changes to their NDIS Plan and be provided with time to provide input as well as make decisions about the updated Plan.

Recommendation 4:

The reasons for the decisions made by the CEO and/or delegate should be provided to the participant, regardless of whether the participant asked for the reasons or not.

Recommendation 4:

The reasons for the decisions made by the CEO and/or delegate should be provided to the participant, regardless of whether the participant asked for the reasons or not.

Introduction

Only About Quality’s Director, Kathy Rees (referred to hereafter as ‘I’, ‘me’, ‘my’ or similar), appreciates the opportunity provided by the Department of Social Services to comment on the National Disability Insurance Scheme Participant Service Guarantee. The continued focus undertaken by the National Disability Insurance Scheme (referred to hereafter as the ‘NDIS’) to ensure autonomy and self-determination, independence and meaningful engagement and participation in community life is fully supported, not only in my work life where I can see the impact of a good life for many people with disabilities, but also in the practical support I provided to my daughter for almost forty of years.

So much attention is placed on what a good life looks like for people with disabilities within this Scheme, but little attention is placed on addressing what is involved in a good end-of-life experience as well. While Only About Quality supports the majority of amendments proposed for the NDIS Act 2013 in the National Disability Insurance Scheme Amendment (Participant Service Guarantee and Other Measures) Bill 2021 (the Bill), further attention is required to address the issues confronting people with disabilities and their family carers when circumstances change and deteriorate, with the participant’s death being the probable outcome.

The focus on service guarantees will certainly assure people with disabilities and family carers that supports will not be jeopardised or placed at risk at any stage of the person’s life. Moreover, providing scope to address updates and amendments to the participant’s Plan during this period could alleviate unnecessary stress experienced by participants and/or their family carers when funding concerns become apparent during the palliative and end-of-life period. The proposed reforms could be enhanced by ensuring end-of-life care is timely, respectfully and professionally supported, with planning activities and coordination strategies being in place to support this stage of the participant’s life.

Only About Quality also has concerns about the limited consultation period for these changes. Meaningful opportunities for including people with disabilities facing, or involved in, palliative and end-of-life care situations may not be incorporated within this consultation process. Similarly, ongoing confusion about being assured of necessary palliative and end-of-life supports at this stage of the person’s life may continue to be experienced by people with disabilities and their family carers, thereby reducing the likelihood of these people’s voices being heard.

Therefore, the first recommendation Only About Quality would make is for the NDIA to provide extensions to the public consultation to include the voice of people involved in and/or experiencing end-of-life situations.

Recommendation 1:

The NDIA provide extensions for people involved in and/or experiencing end-of-life situations to submit to the public consultation.

This submission focuses primarily on changes to plan variations and reasons for decisions, with a particular emphasis on ensuring variations respectfully accommodate the participant’s individual circumstances during palliative and end-of-life care.

Changes to plan variations and reasons for decisions

Within the auditing work I have undertaken during the past decade and more noticeably, within the past five years since the NDS has become operational across Australia, I have witnessed important improvements in participant’s lives when the person with disability is at the helm of their own life. Goals and aspirations linked to those identified in the participant’s NDIS Plan have often resulted in the participant living a meaningful life that includes many valued functions and roles. Tailored individual support plans that provide detail about what the participant is seeking to achieve throughout the period of the overarching NDIS Plan and Service Agreement are commonly viewed during audits.

The right of participants to request a plan variation or reassessment, whether for the NDIS Plan or for their service support plan, when their functional capacity is deteriorating or when end-of-life care becomes the focus of quality-of-life activities is an important consideration for many people. Similarly, The ability to vary the main NDIS Plan to accommodate the participants changed circumstances without a full review or reassessment of the Plan will alleviate unnecessary stress for many people and enable supports to be more effectively tailored to meet the participant’s needs during this stage of their life.

However, the scope of decision-making currently vested in the CEO and/or their nominated delegate/s to instigate a plan reassessment or variation, and then vary funding amounts under the Plan without the participant’s consultation or involvement, is a concern. There is often a direct, flow-on effect to the participant’s support arrangements, with service providers having to adapt supports to sometimes include a marked reduction in the participant’s funding, and without any recourse for the participant who is requiring specialised palliative and end-of-life support.

Recommendation 2:

The scope of matters that can be considered by the CEO and/or their delegate when deciding to vary or reassess a participant’s plan should be limited, with transparency regarding appropriate options being made to address a range of different circumstances such as those involving during palliative and end-of-life care.

Participants to be notified of decisions to vary or reassess their NDIS Plans

As stated previously, the CEO and/or their delegate currently has the ability to decide to review the participant’s Plan, with or without the participant’s awareness or involvement. Changes to the NDSI Plan may only become apparent to the participant after the variation has taken effect, or when a new Plan has been prepared. This practice should be amended and updated to ensure participants are made aware of the forthcoming changes to their Plan, along with time for the participant to provide input into the updated Plan.

Recommendation 3:

Participants should be made aware of proposed changes to their NDIS Plan and be provided with time to provide input as well as make decisions about the updated Plan.

This is particularly important for participants who experience significant changes to their support requirements during palliative and end-of-life situations. Sudden changes to the participant’s funding can have wide-reaching impacts, not only for the participant but for the service providers involved in supporting the participant through this period of their life. For example, during audit, service staff

have explained the sudden changes to the participant’s NDIS Plan as being ‘problematic’ and in some cases, ‘devastating’, particularly with ongoing confusion about palliative care within the NDIS arena, what is included and what isn’t as participants progress into palliative and end-of-life care arrangements, as well as the impact a sudden and unexpected reduction of funding can have on the provision of support during palliative and end-of-Life care.

While the NDIS states funding is provided to support an NDIS participant with a palliative care plan in place and who is not hospitalised, supports to assist the participant to undertake activities of daily living may be provided at the same time as palliative care supports1. However, this is not always the case and is often, unfortunately, open to interpretation. For example, planners have been known to reduce funding because ‘palliative care is a health department responsibility’ without acknowledging the impact of the participant’s disability on their ongoing support requirements. It is often the case that people with disabilities experience additional challenges during the palliative and end-of-life period such as increased risks associated with dysphagia; respiratory issues; nutritional changes; impat of diabetes; continence changes; increased requirement for wound, pressure care, and podiatry care; and issues with epilepsy, all of which have been identified in a range of research as contributing to avoidable and preventable deaths for people with disability2.

Similarly, the link between an NDIS Plan and acknowledgement of the positive role of a Palliative Care Plan is not very clear, nor is evidence of how the NDIS supports these other plans very visible. In some cases, service providers state they have considered alternative terms for ‘palliative care’ to address what is, in fact, a stage of life experienced by every human being. As a result, a participant requiring palliative and specific end-of-Life care may find that they are having to navigate a suddenly fragile funding environment because of differing opinions about palliative care being the sole responsibility of the health system, not the disability support system – at the same time as they are living through this stage of their Life.

At the same time as participants and family carers are living through the changes associated with palliative and end-of-life care, unexpected changes can be made by the CEO and/or their delegate to change the participant’s NDIS Plan, most often without the participant’s awareness or involvement. While it is the participant’s right to appeal a decision made by the CEO and/or nominated delegate at this stage of the participant’s life, this is often done at a time when the reasons for changes to the plan are unknown to the participant. The CEO and/or delegates should provide the reasons for decisions, regardless of whether the participant and/or family carers asked for this information or not.

Recommendation 4:

The reasons for the decisions made by the CEO and/or delegate should be provided to the participant, regardless of whether the participant asked for the reasons or not.

In my auditing work, support plans frequently address activities of daily living and specific goals and aspirations for the participant. Very rarely, however, do I see evidence of the service seeking details Page5

1 Disability-related Health Supports Operational Guideline. Online at www.ndis.gov.au/about-us/operational- guidelines/disability-related-health-supports-operational-guideline 2 See, for example, research conducted by the Office of the Public Advocate (Qld) on Deaths in Care of People with disability in Queensland 2016; the University of New South Wales research conducted by Salomon & trollor (2019) on A scoping review of causes and contributions to deaths of people with disability in Australia: summary of recommendation, online at www.ndiscommission.gov.au/sites/default/files/documents/2020- 02/summary-recommendations-24.pdf

  • Of the participant’s statutory health authority3 or statement of choices4 (or similar) regarding end-of- life decisions and possible requirements for support at this time. Moreover, support plans rarely

  • Acknowledge the need for, or specific detail of, advanced care planning for participants, including for situations where participants are residing in 24/7 accommodation settings. Advanced care plans assist

  • People to plan for their current and future health care, and involves detailing values, beliefs and preferences with family carers and doctors. This process helps other people to make decisions about the participant’s care when the person is unable to do so (for whatever reason). While the processes associated with advanced care plans ideally start when the participant is well and then continue throughout the person’s life5, evidence of this practice is not commonly viewed for NDIS participants. In fact, there have been unfortunate situations where an advanced care plan has been refused to be

  • Implemented by service providers. Not only can the CEO and/or delegates make changes to the NDIS Plan, the service provider can impose restrictions that place additional stress and pressure for the participant and/or family carers at an already difficult time.

  • It is not clear how the NDIS, its CEO and/or delegates acknowledge situations within the review, variation and/or reassessment of the NDIS Plan where additional specialist input is required, for example, from palliative medical and nursing specialists, and where service providers refuse to enact specialist plans for the participant. Where decisions have been made by the CEO and/or delegates to

  • Reduce funding for participants in palliative or end-of-life situations, an appeals process should be readily accessible by the participant and/or family carers or advocates.

Recommendation 5:

An appeals process should be readily accessible by the participant and/or family carers or advocates.

Final Comments

Only About Quality and its Director, Kathy Rees, have attempted to review and comment on the proposed changes to the NDIA Act within a very tight consultation timeframe. Ideals such as ensuring people with disabilities continue to be central to the NDIS and should therefore be included in a co- design capacity need to be actioned by the NDIS and the NDIA as a matter of urgency. By doing so, and actively including participants and/or family carers facing palliative and end-of-life care and support, assurances of a genuine service guarantee across the participant’s lifespan may be possible.