NDIA Accountability Project

Adjudicating Rights for a Sustainable National Disability Insurance Scheme

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Submission to the Joint Standing Committee on the

National Disability Insurance Scheme

Inquiry into Current Scheme Implementation

and Forecasting for the NDIS

Associate Professor Kylie Burns

Professor Susan Harris Rimmer

Professor Michele Foster

Dr Eloise Hummell

Ms Alyssa Venning

28 February 2022

Contact:

Associate Professor Kylie Burns Email: k.burns@griffith.edu.au Phone: +61 (0)7 3735 3642 /

ARC Discovery Project (ARCDP2001100742) Adjudicating Rights for a Sustainable National Disability Insurance Scheme Research Investigators:

Prof Michele Foster1, A/Prof Kylie Burns2, A/Prof Susan Harris Rimmer2 Dr Eloise Hummell1, Ms Alyssa Venning1

1 The Hopkins Centre, Menzies Health Institute Queensland, Griffith University 2 Law Futures Centre, Griffith Law School, Griffith University

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About Us

The Hopkins Centre, established in 2017 and co-located at Griffith University and Metro South Hospital and Health Service, is Queensland’s premier research agency examining rehabilitation and resilience for people with disability. With over 200 research affiliates, including both academics and clinicians, The Hopkins Centre’s approach to research involves a distinctive coupling of the voice of lived experience with systems and policy analysis. The Hopkins Centre’s work transcends traditional disciplinary boundaries to investigate how to drive improved outcomes for people with severe disability through translating research into effective policies and practice.

The Law Futures Centre was established in 2015 to produce outstanding scholarship that anticipates, innovates, and meets pressing emerging challenges for law and legal institutions in Australia and internationally. Bringing together researchers from law, environmental sciences, international relations, business, health, criminology and humanities, Law Futures Centre members are committed to outstanding collaborative research that harnesses law as a key melioristic tool for shaping a better, more just future.

As academics and researchers from these two Griffith University centres, in drafting this submission we have drawn upon both our individual expertise and some of our preliminary work on a current research project, Adjudicating Rights for a Sustainable NDIS (2020-2022), which is funded by an Australian Research Council (ARC) Discovery Project (ARCDP2001100742) grant. The project is described more fully in the Appendix to this submission.

Summary of Submission

  1. Considerations about scheme sustainability and any consequent policy ‘solutions’ must be evidence based; based on independent research; and trust, codesign and transparency are critical.
  2. Any consideration of overall sustainability of the scheme must balance the costs of running the scheme against the economic and social benefits the scheme produces. There will also be non-economic benefits such as increased dignity and individual and family wellbeing that should be considered.
  3. Economic data on broader benefit of the NDIS, including cross-budgetary savings for both the Commonwealth and States (for example, in health and hospitalisation costs, justice costs) is not currently available. In the absence of this data, policy responses which restrict NDIS access or reduce individualised supports may increase financial burdens on other aspects of Commonwealth and State budgets which is counterproductive to the original intent of the NDIS.
  4. Transaction costs of a scheme which under-performs or which is not administratively just need to be accounted for, for example, the cost of increased AAT appeals.
  5. More research is required on whether early intervention reduces scheme costs long-term; whether current exit rates are appropriate; whether services delivered are value for money in terms of benefits provided; the extent to which supports are reasonable and necessary and what benchmarks are used to measure this.
  6. Any questions relating to financial sustainability of the NDIS should take into account Australia’s obligations under the CRPD.

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Our Submission

Our submission is based on our current research and review of public submissions to the inquiry.

In our view, it is important that how the NDIS is designed, implemented and funded be consistent with the principles of administrative justice, enhance the rights of people with disability and are consistent with the Convention on the Rights of Persons with Disabilities (CRPD).

TOR (b) The interfaces of NDIS service provision with other non-NDIS services provided by the States, Territories and the Commonwealth, particularly aged care, health, education and justice services

We agree with the submission of the Melbourne Disability Institute that considerations about scheme sustainability and any consequent policy ‘solutions’ must be evidence based; based on independent research; and trust, codesign and transparency are critical (submission 42).1 In our qualitative research to date with stakeholders in the NDIS, there are strong themes emerging of lack of trust; lack of evidence base and research supporting proposed reforms to the NDIS; and lack of transparency in NDIS decision-making.

We further agree with the evidence of Professor Bonyhady before the JSC on 28 February 2022 that while there are numerous complex factors that have been identified as increasing scheme cost in the Taylor Fry Report,2 critical questions need to be investigated about ‘why’? For example, why are there more people (particularly children) joining the scheme and less people leaving the scheme than anticipated?3 Whether scheme costs increases are reasonable (or unsustainable) are very much linked to why the cost has increased.

Any consideration of overall sustainability of the scheme must balance the costs of running the scheme against the economic and social benefits the scheme produces. The Taylor Fry report which considered only the costs of the scheme, note the ‘impact of the scheme on outcomes and lifetimes benefits for participants, their families, or society more broadly’ are important for evaluating the overall effectiveness of the scheme.4 This would also be crucial information for the State partners to be able to assess savings to the hospital system or other savings.

There is data, including the NDIA Outcomes Framework survey data, that demonstrates that the Scheme is making perceived improvements in the lives of both participants and carers in many areas.5 There will also be non-economic benefits such as increased dignity and individual and family wellbeing

1 https://www.aph.gov.au/ParliamentaryBusiness/Committees/Joint/NationalDisabilityInsuranceScheme/ImplementationForecast/Submissions 2 Independent review of NDIA actuarial forecast model and drivers of Scheme costs published (Taylor Fry Report 2022). https://www.ndis.gov.au/news/7347-independent-review-ndia-actuarial-forecast-model-and-drivers-scheme-costs-published 3 https://parlinfo.aph.gov.au/parlInfo/download/committees/commjnt/25660/tocpdf/National%20Disability%20Insurance%20Scheme%20Joint%20Committee20220228.pdf;fileType=application/pdf#search=%22NDIS%22 4 Review of NDIA actuarial forecast model and drivers of Scheme costs (dss.gov.au). 5 For example, see Quarterly Reports | NDIS Q1 2021-2022, at pages 27-41.

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that should be considered. Substantial growth in the NDIS workforce over time is producing benefits for the broader Australian economy.6

However, economic data on broader benefit of the NDIS, including cross-budgetary savings for both the Commonwealth and States (for example, in health and hospitalisation costs, justice costs) is not currently available.7 In the absence of this data, policy responses which restrict NDIS access or reduce individualised supports may increase financial burdens on other aspects of Commonwealth and State budgets which is counterproductive to the original intent of the NDIS.

In addition, the transaction costs of a scheme which under-performs or which is not administratively just needs to be accounted for. For example, the proportionate rate of AAT appeals to active participants has grown exponentially in the last year from 0.38% in December 2020 to 1.55% in December 2021.8 This increases the financial and psychological costs to participants, puts strain on AAT staffing and capacity, and has flow on effects to the under-resourced advocacy sector.

Further, as noted in the recent Taylor Fry Report, there are a range of areas where the current evidence base does not allow reliable assumptions to be made about the extent to which various factors are contributing to scheme cost and where further research is required. For example, whether early intervention reduces scheme costs long-term; whether current exit rates are appropriate; whether services delivered are value for money in terms of benefits provided; the extent to which supports are reasonable and necessary and what benchmarks are used to measure this. These questions require quantitative and qualitative research.

TOR (c) The reasons for variations in plan funding between NDIS participants with similar needs, including:

  • i. the drivers of inequity between NDIS participants living in different parts of Australia,

  • ii. whether inconsistent decision-making by the NDIA is leading to inequitable variations in plan funding, and

  • iii. measures that could address any inequitable variation in plan funding

We note previous inquires including the JSC Planning Inquiry and the ANAO found issues with consistency of planning and decision-making controls for participant plans that suggest ongoing inconsistency in determination of reasonable and necessary funding.9 However, it remains unclear whether determinations of individualised funding are objectively too high or too low by the legal standard of ‘reasonable and necessary’, especially when an individual may have the same functional impairment as another but different life goals.

6 See further Senate Community Affairs Legislation Committee, 2021-22 Answer to Questions on Notice, Q DSS Sq21-000819 7 Joint Standing Committee on the NDIS, Answer to Question on Notice, Q IQ22-000006 8 Quarterly Reports, NDIS Q1 2021-2022 at p. 61. 9 https://www.anao.gov.au/work/performance-audit/decision-making-controls-ndis-participant-plans

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We note that there is a significant role in the planning process for Typical Support Packages and Reference Packages.10 The Reference or TSP packages are not publicly available so there is no transparency as to whether and how appropriate they are in determining reasonable and necessary supports which are consistent with NDIS legislation.

Reference package: An actuarial tool Provides the basis for… Typical support package: A planning support tool Informs the development of… Individual package: A participant’s approved package of supports
Benchmark cost profiles based on a participant’s characteristics Indicative package generated by the guided planning process (modifies the reference package for a participant’s needs) The approved package of supports - tailored from the typical support package and approved by a delegate

Source: ANAO summary of NDIA documentation.

We consider that is unfortunate that the National Injury Insurance Scheme which was recommended by the Productivity Commission for lifetime care and support accident-caused disability, has only to date been rolled out by States and Territories for motor vehicle and work- related injuries. This has placed additional financial pressure on the NDIS and has created disparity between care and support for accident- caused disability based only on how the injury was caused. This is particularly important given States (rather than the Commonwealth) generally control the content and enforcement of legislation and regulation which may be used to deter accident-causing behaviour or lower risks of accidents.

TOR (h) Any other related matters

Convention on the Rights of Persons with Disabilities (CRPD)

The financial sustainability of the NDIS should be construed with reference to Australia’s obligations under the CRPD. The NDIS Act is designed to bring the principles and obligations of the CRPD into Australia’s domestic legislation by providing access to nationally consistent funding and support to help people living with disabilities realise their aspirations, and to participate in the social and economic life of the community. The preamble of the CRPD, and the General Principles set out in Article 3, reflect the need for the respect for the inherent dignity, individual autonomy (including the freedom to make one’s own choices and the independence of the person); the need for persons with disabilities to be able to participate fully and effectively and be included in society; the need for respect for difference and acceptance of persons with disabilities as part of human diversity; and providing persons with disabilities the opportunity to be involved actively in decision-making processes about policies and programmes, including those directly concerning them. As DPOs have said for decades: “Nothing about us without us”.

In particular the NDIS Act should bring to life Articles 3 (general principles), 4 (general obligations), 7 (children with disabilities), 9 (accessibility), 19 (living independently and being included in the

10 See Taylor Fry Report, p 80 and ANAO diagram below, [2.14]=[2.16]

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community), 22 (respect for privacy) and 23 (respect for home and the family).11 In late 2019, the Committee published its findings and recommendations on its recent review of how Australia is meeting its obligations under the CRPD.12 The Committee was deeply concerned about the following issues relating to NDIS assessments. They found that:

  • Disability assessments under the NDIS are still relying heavily on the medical model of disability;
  • The NDIS not providing equal opportunities for older persons with disabilities;
  • The NDIS was inaccessible because it is too complicated to access, and did not address the lack of services in remote areas; and
  • The lack of sustainable and well-resourced individual & independent advocacy programs.

Some of the Committee’s recommendations for Australia included the following:

  • Australia should carry out Disability Rights Impact Assessments on any legislative changes that may impact the rights of persons with disabilities.
  • Review disability assessment criteria for support schemes under the NDIS and align them with the human rights model of disability, ensuring adequate support for older persons with disabilities, CALD or Indigenous persons with disabilities, and persons with intellectual or psychosocial disabilities.
  • Australia should make the NDIS application and review processes easier for people with a disability to use and make sure that all information is accessible.
  • Ensure that all Australians with disabilities have access to ongoing, sustainable and well- resourced individual and independent advocacy programs, especially outside of the NDIS.13

We stand willing to give evidence to the Committee if required.

Kind regards,

Kylie Burns, Michele Foster, Susan Harris Rimmer, Eloise Hummel and Alyssa Venning

APPENDIX

About the ARC Project Adjudicating Rights for a Sustainable National Disability Insurance Scheme

(ARCDP2001100742)

11 The other relevant treaty provisions are Article 10 of the International Covenant on Economic, Social and Cultural Rights (ICESCR); Articles 2 and 26 of the International Covenant on Civil and Political Rights (ICCPR); and the Convention on the Rights of the Child (CRC), especially Articles 2, 9, 18 and 23. 12 Concluding Observations: UN Report on Australia’s Review of the Convention on the Rights of Persons with Disability (CRPD), 24 September 2019. Available at https://www.afdo.org.au/wp-content/uploads/2019/09/UN-Outcomes-Report-on-Australia.pdf 13 See Committee recommendations p3. Available at https://www.afdo.org.au/wp-content/uploads/2019/09/UN-Outcomes-Report-on-Australia.pdf

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By enhancing the visibility and transparency of decision-making processes and priorities, and promoting informed public discussion, this project will contribute to making the National Disability Insurance Scheme a fair and sustainable scheme, and an international exemplar. The study involves three phases conducted over three years (2020 - 2022) and employs a multidisciplinary, translational design incorporating analysis of social, policy and legal frameworks, qualitative interviews, analysis of administrative data and qualitative case study methods to develop both a broad national understanding of dominant frames surrounding the administrative justice decisions and concepts of justice; and a more nuanced understanding of administrative justice as experienced by participants.

The project will highlight the power and justice effects of the administration of the NDIS, including what principles and values serve as dominant justifications for reasonable and necessary support, areas of contestation with choice and control, and the discrepancies in how administrative justice is viewed. The findings will contribute to a better understanding of which participants the NDIS is failing and contribute to a critical debate about the values guiding funded support decisions and fairness outcomes.

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