Concerns Regarding Independent Assessments for Indigenous Australians | External submission

SUBMISSION to the Joint Standing Committee on the National Disability Insurance Scheme’s Inquiry into

Submitted by: INSTITUTE FOR URBAN INDIGENOUS HEALTH (IUIH) MARCH 2021

About the Institute for Urban Indigenous Health (IUIH)

IUIH is Australia’s largest Indigenous health and aged care provider.

IUIH was established in 2009 as a strategic response to the significant growth of the Indigenous population within the South East Queensland region (SEQ). SEQ is the fastest growing and largest Indigenous population region in Australia – estimated to be 100,000, almost 40% of the entire Queensland and 11% of the entire Australian Indigenous population.

As the regional lead of a network of five Member Aboriginal and Torres Strait Islander Community Controlled Health Services (ACCHSs) in SEQ, IUIH has driven the development and implementation of transformational change to the way health care services are delivered for Indigenous Australians. Through pioneering ground-breaking Indigenous designed and delivered services, this has led to unprecedented improvements in health access and outcomes – with IUIH recognised as having made one of the most significant impacts of any Indigenous health organisation in Australia, in the shortest period, and with a national best standard of care1.

IUIH’s System of Care has been showcased as an international exemplary best practice2, including closing the preterm birth gap for the first time in Australia.

In both the health and aged care sectors, IUIH has been recognised as having an increasing national leadership role in implementing evidence-based models to close the gap faster for Indigenous Australians. This included a significant contribution to informing the Aged Care Royal Commission’s recommendations to reform the sector for Indigenous Elders. These recommendations are directly relevant to the disability sector and the current Joint Standing Committee Inquiry on the National Disability Insurance Scheme (NDIS) Independent Assessments.

In 2019-20 IUIH was funded by the National Disability Insurance Agency (NDIA) to implement a Pilot Project of National Significance which tested alternate Indigenous pathways to the current access and plan building arrangements. The outcome of this Pilot demonstrated significant improvements in access, compared to mainstream, and again is highly relevant to considerations by the Joint Standing Committee.

Further information about IUIH can be found at: https://www.iuih.org.au/about-iuih/

Contact

Mr Adrian Carson

CEO, Institute for Urban Indigenous Health

1 Citation in IUIH’s joint win of Reconciliation Australia’s 2018 National Indigenous Governance Awards. 2 Australian Journal of Primary Health, October 2019. Building a regional health ecosystem: a case study of the Institute for Urban Indigenous Health and its System of Care. Available at: http://www.publish.csiro.au/PY/PY19038

Submission

The NDIS Independent Assessments, as proposed in the NDIS Consultation Paper: Access and Eligibility Policy with independent assessments, would introduce additional access barriers for Indigenous people into an already complex and inequitable system. The proposed approach would only further widen the already significant equity gap experienced by Indigenous people with disability.

The Institute for Urban Indigenous Health (IUIH) therefore calls on the Government to:

immediately cease the rollout of the NDIS Independent Assessments reforms for Indigenous people with disability as proposed in the consultation paper, and
honour its commitments under the National Agreement on Closing the Gap 2020, which mandate that systems change of this nature must be undertaken as an outcome of shared decision-making with Indigenous Australians.

This would require NDIA to work closely in a genuine partnership with Indigenous communities and Aboriginal Community Controlled Organisations (ACCOs) in developing a culturally appropriate and safe assessment process for Indigenous people, which would improve equity in access in the NDIS for Indigenous people.

Our submission draws attention to critical considerations and relevant examples to inform the development of such an equitable Assessment Process for Indigenous people.

National Agreement on Closing the Gap 2020 (CTG Agreement)

Both the content of and process to design and deliver, the Independent Assessment reforms are manifestly an abrogation of the Government’s CTG Agreement commitments. Despite NDIS rhetoric ascribing to the importance of culture, this has failed to structurally and systemically translate into program practice and design. There has been no meaningful consultation or, most importantly, co-design with Indigenous people.

Under the CTG Agreement3, the Government’s obligations are clear. In the Agreement’s own words, these include:

commitment to ‘a fundamentally new way of developing and implementing policies and programs that impact on the lives of Indigenous people’, including an imperative for all governments and agencies, including the NDIA, to implement Indigenous-led solutions through ‘systematic and structural transformation’ of existing design architecture of mainstream programs
that ‘when governments are undertaking significant changes to policy and programs they engage fully and transparently with Indigenous people’. These engagements should be done in a way where Indigenous ‘have a leadership role in the design and conduct of engagements’, including so that ‘decision-making is shared between government and Indigenous people’ and the ‘the voices of Indigenous people hold as much weight as the governments’

3 National Agreement on Closing the Gap 2020. Available at: https://www.closingthegap.gov.au/national-agreement-closing-the-gap

‘funding prioritisation policies’ that build the capacity of, and ‘give preference to, community- controlled organisations’, acknowledging the overwhelming evidence-base that ‘Indigenous designed, controlled, and delivered services will close the gap faster’. The disability sector is one of four priority areas required to have a community-controlled Sector Strengthening Plan by mid- 2021
where ‘new initiatives are decided by governments which are intended to service the broader population’ - such as the NDIS Independent Assessments - funding is appropriated so that a ‘meaningful proportion is allocated to Indigenous organisations with relevant expertise, particularly community-controlled organisations’ and that this allocation ‘takes into account the service demands of Indigenous people’.

In stark contrast to these commitments, and despite claims by the Government that the reforms will enhance equity, the NDIS Independent Assessments, as proposed, will only further widen the equity gap already experienced by Indigenous people with disability.

The gap is already wide. Based on the latest NDIS and ABS data, only half (47%) of the expected Indigenous NDIS Participant population in Australia requiring assistance are receiving NDIS supports, compared to 93% of expected NDIS Participants for all Australians.4 This represents a major access gap for one of the most disadvantaged groups of Australians and is a direct result of a total lack of systemic Indigenous- specific pathways within the NDIS system – pathways that are essential to support culturally safe access, assessment, and care. The current plans for a ‘one-size-fits-all’ approach to NDIS assessment will make an already flawed system substantively more difficult for Indigenous people to navigate.

Accordingly, the need for Indigenous-led reform within the NDIS is both urgent and incontrovertible. Propitiously, there are examples of how this should be progressed.

Health and Aged Care Sectors

IUIH points to the community-controlled health sector, where, for 50 years, Indigenous-specific care pathways have delivered substantively better access for Indigenous people than the aged care and disability sectors.

This longstanding and evidential health experience should be the template for shaping the reforms required in the NDIS - as is now the emergent example of aged care, where the Final Report of the Royal Commission into Aged Care Quality and Safety, in acknowledging that the aged care system had failed Indigenous Australians, has recommended the implementation of Indigenous-specific pathways within the aged care system. 5

The Aged Care Royal Commission’s recommended aged care Indigenous pathways include:

a priority to resource and promote more flexible arrangements for expanded community- controlled access, assessment and service provision

4 For details of Participant calculation data, refer to Further Analysis section below 5 Final Report, Aged Care Royal Commission, February 2021. Volume 3A, Chapter 7, Aged Care for Aboriginal and Torres Strait Islander People. Available at: https://agedcare.royalcommission.gov.au/publications/final-report-volume-3a

funding the systematic rollout of Indigenous Care Finders to support Indigenous Elders navigate the entry, assessment and service delivery pathways
implementing Indigenous-specific assessment teams where there was regional scale, and that in smaller populations, at least one Indigenous assessor be part of any assessment team
improving access for Indigenous Elders through leveraging the nationwide network of 150 Aboriginal Community Controlled Health Services (ACCHSs) who already have trusted and established cultural relationships with a substantial proportion of Indigenous Australians.

These recommended aged care reforms have direct relevance and replicability for the NDIS, where even greater barriers exist for Indigenous people with disability.

Barriers to Access

These barriers have been poignantly highlighted by recent and preeminent research studies. For example:

The Lowitja Institute commissioned research by the University of Melbourne’s Centre for Health Policy (May 2019), which found significant impediments for Indigenous people accessing NDIS. The study recommended strengthening cultural brokerage to facilitate access and strengthening existing provider-participant relationships in the engagement and planning processes, including capitalising on these relationships to build trust with participants (such as Aboriginal Community- Controlled organisations). This includes elevating cultural safety in considering respective roles of assessment/planning/service provision agencies and recommending that potential conflicts of interest can be managed in this context6
The Australian Social Policy Association commissioned research by the University of Melbourne and Western Sydney University, which found that fear and mistrust of mainstream services are major deterrents to accessing care, resulting in twice the rates of discrimination and avoidance of service access experienced by Indigenous people with disability (compared to Indigenous without disability). By contrast, the one exception was within the Aboriginal communities themselves, where disabled Indigenous individuals are included and participate in the community at the same rate as Indigenous people without a disability. When Indigenous people control the decisions that affect their lives, they have better health and wellbeing. Unlike other sectors such as health, this research further highlighted the current absence of an overarching self- determining framework guiding the policy and program development of the NDIS and the urgent need to privilege Indigenous voices in redesigning the NDIS. 7

The Government contends that the Tune NDIS Review supports the intended Independent Assessments; however, it fails also to reference the Tune Review’s key recommendation that ‘refocussed efforts are required to address serious inequities in Indigenous access’.

6 Ferdinand et al. Understanding disability through the lens of Aboriginal and Torres Strait Islander people – challenges and opportunities. Melbourne, Australia: Centre for Health Policy, University of Melbourne, 2019 7 Temple et al. Exposure to interpersonal racism and avoidance behaviours reported by Aboriginal and Torres Strait Islander people with a disability. Aust J Soc Issues

The Government further defends the reforms as ‘retro’ aligning to the original design intent of the NDIS. However, as already indicated, the scheme initially was, and now continues to be, fundamentally misaligned with the Government’s own CTG Agreement commitments. Given that the NDIS is the single most significant reform measure since Medicare, this represents a remarkable national policy failure.

Of note, during a face to face consultation with the Queensland Aboriginal Community Controlled Health sector, Commissioners from the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability regarded this policy failure as a ‘form of neglect’ and requested IUIH make a submission.8

IUIH’s submission to the Disability Royal Commission is available at https://www.iuih.org.au/strategic-documents/policy-submissions/

IUIH NDIS Pilot Project of National Significance

In one notable exception to this policy failure, and following lengthy and robust advocacy by IUIH, in April 2019, the NDIA funded IUIH to conduct an NDIS Pilot Project of National Significance (NDIS Pilot).

In contracting IUIH for the NDIS Pilot, the NDIA made, what was at the time, an unprecedented commitment to a partnership aimed at reforming Access and Plan Development pathways into the NDIS for Indigenous people with disability in South East Queensland (SEQ) – pathways which would run in parallel to the NDIA’s ‘mainstream’ Local Area Coordination (LAC) and Early Childhood Early Intervention (ECEI) Partners.

Notably, the NDIS Pilot was aptly ascribed as having ‘nationally significant’ objectives, viz. to build the requisite evidence to reshape NDIS program architecture so that the needs of Indigenous people with disabilities across Australia could, for the first time, be systematically supported in an accessible and culturally safe manner.

In a ‘recast’ of the current NDIS LAC and ECEI partner arrangements, the NDIS Pilot replaced the LAC model by establishing a parallel Indigenous pathway - alternate teams of Indigenous staff engaging with potential Participants through the engagement, eligibility testing, pre-planning, and Plan build stages. Critically, this new approach was built on cultural integrity, trusted relationships and complete integration with the health care, family support, aged care and disability systems operated by the IUIH Network. Anchored in culturally trusted health providers (the IUIH Network of five ACCHSs), the Pilot supported a seamlessly navigable service system and provided support during the critical plan building stage. These have both proven to be critical success factors in achieving outcomes.

On completion in August 2020, the NDIS Pilot had engaged over 900 Indigenous participants in South East Queensland. Overwhelmingly, the experience of these participants is that they would not have accessed needed disability supports if left to the usual mainstream NDIS pathways.

8 On 6 February 2020, IUIH participated in consultations with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. The three commissioners in attendance were: The Honourable Roslyn Atkinson AO; Mr Alastair McEwin AM; and Ms Andrea Mason OAM.

Significantly, the NDIS analysis showed that the NDIS Pilot achieved an astonishing three (3) times better ‘access met’ rates and ten (10) times better ‘plan approval’ rates compared to standard NDIS arrangements.

This represented a compelling validation of the proposition that efforts to realise improved NDIS participation will fail for Indigenous people unless there is cultural adaptation and apposite Indigenous- led program redesign and delivery. When Indigenous people control the decisions that affect their lives, they have better health and wellbeing.

Despite these life-changing outcomes, the NDIA ceased funding for the project and did not progress evaluation and translation of this success story into a replicable national model - which was the intention of the Pilot and commitment given by the NDIA. However, the learnings from the project are analogous and directly relevant to informing how the implementation of the NDIS Independent Assessment should proceed. IUIH calls on the Joint Standing Committee to draw on this experience in framing its response to the significant concerns raised in this submission.

Recommendations

IUIH makes the following recommendations:

The Government must immediately cease the rollout of the National Insurance Scheme (NDIS) Independent Assessments reforms for Indigenous people with disability
The Government must honour its commitments under the National Agreement on Closing the Gap (2020), which mandate that systems change of this nature must be undertaken as an outcome of shared decision-making with Indigenous Australians. Consistent with this CTG Agreement, Government and the NDIA must give Indigenous Australians a leadership role in the co-design of all current and future NDIS arrangements, including any proposed assessment changes as they apply to Indigenous people with disability
Consistent with its commitments under the CTG Agreement, the recent Aged Care Royal Commission recommendations relating to Indigenous Elders, the evidence-based from 50-years of experience in the Indigenous health sector, and the successful outcomes of the IUIH NDIS Pilot Project of National Significance, the Government should, through a co-design process:
- Give preference to and ensure priority NDIS funding of Indigenous community-controlled organisations, acknowledging the evidence-based that Indigenous designed and delivered services will close the gap faster
- Establish specific and Indigenous-led Pathways for Indigenous Australians with disability, which operate in parallel to ‘mainstream’ NDIS programs. These should include:
  - Funding the systematic rollout of Indigenous Care Finders to support Indigenous people navigate through the entire NDIS access, assessment and service delivery journey
  - implementing Indigenous-specific NDIS assessment arrangements where there is regional scale (e.g. greater than 2,000 Indigenous people), and that in smaller

populations, at least one Indigenous assessor be part of any assessment arrangement
- leveraging the nationwide network of 150 Aboriginal Community Controlled Health Services (ACCHSs) who already have trusted and established cultural relationships with a substantial proportion of Indigenous Australians. This will promote integrated care and includes utilising the considerable assessment expertise of health professionals within the ACCHSs, and, consistent with best practice, acknowledging that culturally acuity and trusted relationships are equally if not more important, than notions of ‘independence’

Additional Analysis

IUIH provides the following additional analysis about the proposed Independent Assessment initiative.

(1) The ‘independent assessments’ initiative will continue to embed a pattern of what can be labelled as systemic racism towards Indigenous Australians, which has characterised the design and implementation of the NDIS since its launch.

For example, despite the overwhelming evidence of disadvantage, the Government has never set targets for or required that a single Indigenous person with disability need ever be granted NDIS access and/or receive an NDIS Plan. This includes no minimum targets for LAC and ECEI contracted organisations. Alarmingly, the one evidence-based example (IUIH NDIS Pilot Project) demonstrating success in addressing cultural access barriers has been disbanded by the NDIA.

Further, while there is now a commitment to build the disability community-controlled sector, specific performance targets remain absent from the new CTG Agreement. This contrasts with the health sector, where specific access and outcome targets, including 25 national key performance indicators, are set and require six-monthly reporting against outcomes for Indigenous Australians.

(2) Public reporting on Indigenous participation in the NDIS obscures the already wide gap in Indigenous access and consequently will not highlight the additional adverse widening of the gap through the culturally inappropriate ‘independent assessments’ rollout.

For example, the current NDIS quarterly dashboard reports the number of Indigenous participants as a percentage of all persons having gained access and having approved Plans. This percentage is currently at 6.7%.9 However, the rate of Indigenous persons having achieved access into the NDIS and having approved Plans as a percentage of the Indigenous population is only around 3% - 4%.

This ‘true’ access rate reflects the most authoritative analyses of equitable Indigenous access and participation converge which projects that a minimum of 7% of the Indigenous population should be NDIS

9 NDIS National Quarterly Performance Dashboard, December 2020. Available at: https://www.ndis.gov.au/about- us/publications/quarterly-reports

participants with approved Plans. This is based on the AIHW estimate of 7.3% of the Indigenous population with a severe or profound disability 10. AIHW’s estimate references a range of relevant statistical collections. For example, among Indigenous Australians aged 15 and over living in non-remote areas, the rate of severe or profound disability was:

7.2%, according to the ABS 2015 Survey of Disability, Ageing and Carers (SDAC)
7.8%, according to the ABS 2014-15 National Aboriginal and Torres Strait Islander Social Survey (NATSISS)
8.5%, according to the ABS 2016 Census11

These data reflect prevalence rates of Indigenous people with a severe or profound disability are almost twice those of non-Indigenous Australians based on age-standardised rates.

Further, this approach is corroborated by the NDIA’s own estimation methodology, which has identified the ABS Census’ Core Activity Need for Assistance’ (class as profound or severe) data as the preferred prevalence projection:12

’For planning and reporting purposes, the NDIA requires projections of Indigenous participants by geographical area, such as Local Government Area (LGA). The Census is therefore used as the basis for estimating NDIS Indigenous participant numbers as it is the only source providing the required level of geographical subdivision.

In this context, IUIH proposes that the assessment frameworks for access into the NDIS and for Plan approvals have to be constructed in large part around their capacity to achieve, rapidly, a conservative 7% target nationwide for Indigenous Participants, which would be 61,25213 The latest actual national Indigenous participant data reported in the NDIA December 2020 Report is 29,08514. According to these data, only 47% of the potential Indigenous NDIS Participant population receive disability supports, with an estimated 32,167 shortfall.

This compares with latest total NDIS participation numbers of 442,20915 from a national government projection of 475,000 Australians expected to receive NDIS supports16, which equates to a total Australian participation rate of 93%.

10 AIHW Disability Support for Indigenous Australians, September 2019 11 For the purpose of calculating prevalence, the ABS Census “Core Activity Need for Assistance” is used, which is an approximation for the number of people with a profound or severe core activity limitation. People with a profound or severe core activity limitation are defined as those people needing help or assistance in one or more of the three core activity areas of self-care, mobility and communication, because of a disability, long-term health condition (lasting six months or more) or old age. 12 NDIS Aboriginal and Torres Strait Islander Participants. Page 14. Available at: https://data.ndis.gov.au/media/1948/download 13 Calculated as follows: Estimated Indigenous Population 0-64 at June 2020 (875,038) times 7% 14 NDIS National Quarterly Performance Dashboard, December 2020. Available at: https://www.ndis.gov.au/about-us/publications/quarterly-reports 15 NDIS National Quarterly Performance Dashboard, December 2020. Available at: https://www.ndis.gov.au/about-us/publications/quarterly-reports 16 Parliament of Australia NDIS Quick Guide. Available at: https://www.aph.gov.au/About_Parliament/Parliamentary_Departments/Parliamentary_Library/pubs/rp/rp1819/ Quick_Guides/NationalDisabilityInsuranceScheme

This is consistent with Queensland, where, based on a 7% (of Indigenous population) projected Indigenous participation rate, the Queensland Audit Office (QAO) projected 14,500 Indigenous people being eligible for the NDIS in Queensland by 2019 17. Current Queensland Indigenous participation numbers of 7,735 18 means only 53% of the eligible Queensland Indigenous NDIS Participant target has been met. This compares with 95% of the total eligible NDIS population target for 2019 in Queensland19 now met 20.

(3) The NDIA needs to construct culturally appropriate Indigenous-specific assessment pathways

As indicated above, this is consistent with the Aged Care Royal Commission’s recommendations to establish Indigenous-specific Indigenous pathways. These include:

funded and systemic implementation of Indigenous Care Finders (e.g., advocates) to assist Indigenous people in navigating through the entire access, assessment, and service delivery journey; and
Indigenous-specific assessment teams (where there is a regional scale) or, at the least, Indigenous assessors within assessment teams.

IUIH strongly advocates for the same approach to be implemented with the NDIS, where research has confirmed even more significant access barriers are evident for Indigenous people with disability. Critically, this is entirely different than a passing reference to the culture which the NDIS has alluded to in its Independent Assessment ‘standardised’ rollout.

Supporting this approach, IUIH strongly endorses, along with the Royal Commission, to use the nationwide infrastructure of Aboriginal Community Controlled Health Services (ACCHSs). These organisations already have legal incorporated status and longstanding contracts with the Australian and State/Territory Governments. ACCHSs already employ the relevant range of health professionals who can work with individual Aboriginal and Torres Strait Islanders living with disability and their family/carers to complete the existing Access Request Form (ARF), including Part F, which requires documenting ‘functional impact’ of disability. ACCHSs can, with the signed Consent of the individuals (or their representatives), act as their trusted intermediaries and supports/advocates through the access process as well as the face-to-face assessment and Plan development engagements - up to the stage where personal goals and correlated supports have been consolidated ready for an NDIA Planner/Delegate to construct a Budget.

17 Queensland Audit Office: The National Disability Insurance Scheme (Report 14: 2017–18). QAO quotes ABS estimates of 14,500 based on ABS 2016 212,534 Estimated Indigenous Population in Queensland 0-64 years 18 NDIS National Quarterly Performance Dashboard, December 2020. Available at: https://www.ndis.gov.au/about-us/publications/quarterly-reports 19 Queensland Productivity Commission Inquiry into the NDIS, Draft Report February 2021, page 90. Available at https://www.qpc.qld.gov.au/inquiries/ndis/ 20 NDIS National Quarterly Performance Dashboard, December 2020. Queensland NDIS Participants 86,535. Available at: https://www.ndis.gov.au/about-us/publications/quarterly-reports

(4) Assessment Tools

There will always be concerns about reliance on template