NDIA Accountability Project

Submission 70 — National Indigenous Australians Agency (Attachment 1) — NDIS participant experience in rural, regional and remote Australia

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National Indigenous Australians Agency

Submission to the Joint Standing Committee on

the National Disability Insurance Scheme

Inquiry into NDIS participant experience in rural, regional and remote Australia

23 February 2024

The National Indigenous Australians Agency acknowledges the Traditional Owners and Custodians of Country

throughout Australia and acknowledges their continuing connection to land, waters and community. We pay our respects to the people, the cultures and the Elders past and present.

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Contents

About the National Indigenous Australians Agency ……………………………………………………………………………………………………….. 4 The NIAA’s role in First Nations disability …………………………………………………………………………………………………………………. 4 Disability and Closing the Gap …………………………………………………………………………………………………………………………………….. 5 Introduction …………………………………………………………………………………………………………………………………………………………….. 6 Progress is being made ……………………………………………………………………………………………………………………………………….. 8 First Nations related recommendations from the NDIS Review ………………………………………………………………………………………. 9 Consultation and Co-design ……………………………………………………………………………………………………………………………………….. 9 Cultural Understanding ……………………………………………………………………………………………………………………………………………. 10 Cultural Safety ………………………………………………………………………………………………………………………………………………………… 10 Access and Accountability, particularly in remote regions ……………………………………………………………………………………………. 12 Care on Country ………………………………………………………………………………………………………………………………………………….. 13 Unmet need………………………………………………………………………………………………………………………………………………………… 14 Integrated care systems ……………………………………………………………………………………………………………………………………… 15 Language barriers ………………………………………………………………………………………………………………………………………………. 16 Place-based, community led care ………………………………………………………………………………………………………………………….. 16 Data …………………………………………………………………………………………………………………………………………………………………… 17 Accountability and Quality Safeguards …………………………………………………………………………………………………………………… 17 A way forward on NDIS access in remote Australia ………………………………………………………………………………………………….. 17 Building the Community Controlled Sector and First Nations Workforce ……………………………………………………………………….. 18 The Justice System and the NDIS ………………………………………………………………………………………………………………………………. 18 Conclusion ……………………………………………………………………………………………………………………………………………………………… 19

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About the National Indigenous Australians

Agency

The National Indigenous Australians Agency (NIAA) is guided by the vision that First Nations peoples are heard, recognised and empowered. We work in genuine partnership to enable the self-determination and aspirations of First Nations communities. We lead and influence change across government to ensure First Nations peoples have a say in the decisions that affect them. The NIAA has a strong regional presence with staff operating from 49 locations across Australia. The NIAA’s regional office staff empower and work closely with communities in urban, regional and remote locations. Through listening, the NIAA has developed and nurtured trusted relationships with local First Nations communities, organisations and other key stakeholders. The NIAA’s regional presence is central to the Agency’s ability to understand the unique needs and priorities of First Nations communities, working in partnership to tailor and deliver effective local solutions. NIAA’s submission to the Inquiry into NDIS participant experience in rural, regional and remote Australia details insights from the lived experience of First Nations people that has been shared with the NIAA and draws on the NIAA’s policy experience.

The NIAA’s role in First Nations disability The Department of Social Services (DSS) leads on disability policy for the Commonwealth, including responsibility for First Nations disability. The NIAA does not have a service delivery role in the context of the National Disability Insurance Scheme (NDIS). However, the NIAA engages extensively and meaningfully with regional, rural and remote communities, and hears (formally and informally) from First Nations people with disability, their families and communities about their experience with the NDIS. Perspectives from service providers and other organisations and local representative bodies seeking to service these communities forms part of this engagement. While the NIAA does not have lead policy responsibility for First Nations disability and does not directly fund programs providing disability services, many of the services and activities funded through the Indigenous Advancement Strategy (IAS) would be accessible for First Nations people with disability. This includes the Community Development Program (CDP), social and emotional wellbeing services, youth and education activities and many others. Under the National Agreement on Closing the Gap (Closing the Gap) Virtual Funding Pool1, the NIAA provides funding to the First Peoples Disability Network (FPDN), the national peak body in the First Nations disability sector, to develop and implement the National First Nations Disability Footprint (Disability Footprint). This project is a key action under the Closing the Gap Disability Sector Strengthening Plan2. The Disability Footprint project commenced in 2022 and has been specifically developed to align with Priority Reform 2, Building the Community Controlled Sector, under Closing the Gap. The project will strengthen

1 strategic-plan.pdf (closingthegap.gov.au)

2 Disability Sector Strengthening Plan (closingthegap.gov.au)

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representation of First Nations people with disability across all policy areas to ensure their needs, expectations and priorities are responded to. The Disability Footprint includes 7 elements:

  • Element 1 – Capacity Building
  • Element 2 – Data and Research
  • Element 3 – Strengthening the Policy Representation Footprint
  • Element 4 – Strengthening a Culturally Inclusive Workforce and Training
  • Element 5 – Strengthening Community Disability Rights Footprint
  • Element 6 – Evaluation
  • Element 7 – Communications Strategy Disability and Closing the Gap The objective of Closing the Gap is to enable First Nations people and governments to work together to overcome the inequality experienced by First Nations peoples and achieve life outcomes equal to all Australians. The Closing the Gap framework has been developed in genuine partnership between Australian governments and the Coalition of Aboriginal and Torres Strait Islander Peak Organisations. To support addressing this, disability has been established as a cross-cutting outcome under Closing the Gap. This requires every socio-economic target, outcome measure and Priority Reform, to achieve better outcomes through being inclusive, accessible and equitable for First Nations people with disability.

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Introduction

The NIAA would like to acknowledge the work of the NDIS Independent Review Panel and especially its focus on First Nations people with disability. First Nations cultures have continued to evolve and thrive despite the ongoing impacts of colonisation, systemic discrimination and intergenerational trauma, including through the Stolen Generations. For many First Nations people, Western notions of ‘disability’ and exclusion on the basis of capabilities are not concepts that readily translate to First Nations languages or cultures. Evidence demonstrates high inclusion in First Nations community life for many First Nations people with diverse capabilities.

First Nations peoples with disability and their families are amongst the most disadvantaged and disempowered members of the Australian community. Even greater challenges and barriers are faced by First Nations women and girls with disability and those in remote communities.

First Nations peoples with disability experience intersectional inequality, which is the compounding of inequality based upon racism and ableism. In 2018-19, around 46 per cent of First Nations Australians aged 15 and over reported having a disability or long-term restrictive health condition3. This inequality has a magnifying effect, driving further social, economic, wellbeing and health inequalities across all socio-economic indicators. The results of intersectional inequality is evident through the confronting statistics on the lives of First Nations peoples with disability (see table 1). Improvements in disability services for assessment, management and support for First Nations peoples would lead to improvements in education and employment outcomes; a decrease in the incidence of suicide; and reduce over-representation in the criminal justice system. Improving supports for First Nations people with disability is vital to Australia achieving its Closing the Gap targets. Table 1, below, offers some key statistics that support the need for a focus on seeking better outcomes for First Nations peoples with disability.

Table 1: Key data on First Nations peoples with disability

Theme Statistic

Incidence of     •   First Nations Australians are up to 3 times as likely as other Australians to have a disability4.

disability       •  An estimated 306,100 First Nations peoples across Australia have disability, of whom an

estimated 66,100 have a severe or profound disability5.

  • Of that 306,100, approximately 34,400 First Nations peoples with disability live in very remote areas, 79,000 live in outer regional and remote, 78,400 live in inner regional; and 114,200 live in major cities.6

3 Australian Institute of Health and Welfare, Health Performance Framework 2023 4 National Aboriginal and Torres Strait Islander Health Survey (NATSIHS) 2018-19 5 National Aboriginal and Torres Strait Islander Health Survey (NATSIHS) 2018-19 6 National Aboriginal and Torres Strait Islander Health Survey (NATSIHS) 2018-19

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Theme Statistic

Access         •  “For all participants living in remote communities who have been in the scheme for at least one

year: − around two in five participants are not getting daily activity supports − over one in three participants are not getting therapy services.”7

Education      •   First Nations students are over-represented in the cohort of students with disability.

  • Thirty six per cent of First Nations students had a disability in 2020. This was double the proportion of non-Indigenous students with a Nationally Consistent Collection of Data on School Students with Disability (NCCD) defined disability (18 per cent).8

    Employment • In the 2014–15 National Aboriginal and Torres Strait Islander Social Survey (NATSISS),

18 per cent of First Nations respondents who were not in the labour force stated having a disability or long-term health condition as the main reasons for not looking for a job.9

  • The 2021 Australian population Census estimated that 15% (5,170) of First Nations people aged 15–64 who needed assistance with core activities were employed; compared with 57% (246,000) of First Nations people aged 15–64 who did not need assistance with core activities10.

    Justice • First Nations Australians that have contact with the criminal justice system are more likely than

their non-Indigenous counterparts to have mental illness or cognitive disability; and to have learning difficulties and lower levels of educational attainment.11

  • 95 per cent of First Nations peoples who appear in court charged with criminal offences have an intellectual disability, a cognitive impairment [commonly hearing loss] or a mental illness.12

    Mental • In the 2018–19 NATSIHS “Indigenous adults reporting high levels of psychological distress were

Health more likely to have a disability (46% compared with 18% for those with no disability).”13

Suicide         •  People with disability (not First Nations specific) are three times more likely to die by suicide

than the general population.14

  • The suicide rate for First Nations peoples, was more than 2.6 times that of non-Indigenous people in the 5-year period 2018-2022.15

  • This means someone with the intersection of Indigeneity and disability could have a significantly heightened risk of suicide.

    Safety • “Indigenous Australians were more likely to report experiencing being a victim of physical or

threatened physical harm if they were someone with a disability or long-term health condition (20% compared with 12% for someone with no disability)”.16

Further data from the Australian Institute of Health and Welfare (AIHW) (2012-13)17 shows that care and health issues are exacerbated for First Nations peoples by remoteness, compared to non-remote:

7 NDIS Review Final Report Page 186, Chapter: Access to supports for First Nations communities and all participants in remote (Source: Department of Social Services, Analysis of NDIS market using NDIS monthly datasets as at 30 June 2023, unpublished, October 2023) 8 Nationally Consistent Collection of Data on School Students with Disability (NCCD). ( Disability Royal Commission Sept 2023 Vol 9) 9 2014–15 National Aboriginal and Torres Strait Islander Social Survey (NATSISS) (AIHW Health Performance Framework (HPF) July 2023) 10 Population: Census, 2021, Australian Bureau of Statistics.

11 AIHW HPF 2.11 - 2023

12 DRC quotes - Senate Standing Committee on Community Affairs, Indefinite Detention of People with Cognitive and Psychiatric Impairment in Australia: Final Report, Parliament of Australia, 29 November 2016, p. 24. https://www.aph.gov.au/Parliamentary_Business/Committees/Senate/Community_Affairs/IndefiniteDetention45/ Report

13 AIHW HPF 1.18 - 2023

14 AIHW. Deaths by Suicide Among People Who Used Disability Services 2023)

15 Causes of Death, Australia, 2022 | Australian Bureau of Statistics (abs.gov.au)

16 The National Aboriginal and Torres Strait Islander Health Study (NATSIHS)

17 4 Determinants of health (The health and welfare of Australia’s Aboriginal and Torres Strait Islander peoples 2015) (AIHW)

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  • Significantly more likely to have high or very high levels of psychological distress than those in remote areas (32% and 24%, respectively).

  • Increased indicators of chronic kidney disease for those in remote (34% compared with 13%).

  • Indigenous peoples aged 2 and over in remote areas were significantly more likely to report cardiovascular disease than those in non-remote areas (18% compared with 11%).

  • Indigenous adults in remote areas were significantly more likely than those in non-remote areas to have diabetes (21% compared with 9.4%). In harmony with the National Aboriginal and Torres Strait Islander Health Plan 2021-2031, the NIAA considers improvements to disability services must be achieved through a strengths-based, human-rights approach with consideration of the United Nations Convention on the Rights of Persons with Disabilities. This includes harnessing opportunities to support self-determination, consistent with the United Nations Declaration on the Rights of Indigenous Peoples, which Australia endorsed in 2009.

Progress is being made The Aboriginal and Torres Strait Islander engagement strategy ‘What we’ve done so far’ published by the NDIS in July 2021, stated that in December 2020:

  • 84 per cent of First Nations participants said they had a good experience making their NDIS plan;

  • more First Nations participants take part in community activities after taking part in the NDIS for 3 years;

  • more First Nations participants aged under 25 have jobs after taking part in the NDIS for 3 years.18 The NIAA acknowledges the work already being undertaken by the National Disability Insurance Agency (NDIA) and the DSS to improve the roll out of the NDIS to rural and remote Australia, via the NDIA’s Rural and Remote Strategy. This includes the Remote Community Connectors, increased funding to support delivery of NDIS services via Aboriginal Community-Controlled Health Organisations and the Thin Markets Trials underway in remote locations across Australia. The NDIS has reported positive outcomes as a result of these actions, including:

  • 6,664 people with disability living in remote and very remote locations receiving NDIS support, an increase of 342 per cent over the past three years; and

  • Employment of 173 Remote Community Connectors covering 274 rural and remote communities over 90 Local Government Areas throughout NT, SA, WA and QLD (as at 31 March 2021)19. However, the NIAA is supportive of more being done to improve outcomes and the lived experience of First Nations peoples with disability.

18 PB ER Aboriginal and Torres Strait Islander Progress Update PDF.pdf

19 Rural and remote strategy | NDIS

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First Nations related recommendations from the

NDIS Review

While the NDIS Review and the Royal Commission were different in scope and focus, there have been many common observations and recommendations, including those responding to the experiences of First Nations peoples with disability. The NDIS Review has five specific actions relating to First Nations peoples and many other recommendations with potential impacts and outcomes for First Nations peoples with disability. NDIS Review First Nations related recommendations are at Attachment A, for reference. Broadly, themes from the NDIS Review relating to First Nations peoples with disability relate to:

  • The need for appropriate consultation and co-design with First Nations.
  • Cultural understanding and cultural safety of disability service provision.
  • Access to services, particularly in rural, regional and remote regions.
  • Building the community controlled sector and workforce.
  • Issues around disability and justice. The NIAA’s submission has been structured to respond thematically to the recommendations in the NDIS Review with consideration to the Inquiry’s terms of reference.

Consultation and Co-design

At the centre of the Closing the Gap are four Priority Reforms that focus on changing the way governments work with First Nations peoples. Priority Reform 1 requires formal partnerships and shared decision making in acknowledgement that governments must work collaboratively and in genuine, formal partnership with First Nations peoples to effect real change. While efforts to achieve understanding and embedding of the Priority Reforms by the Commonwealth and states and territories continue to evolve, there have been some achievements. Some examples of policies that have been developed in genuine partnership with First Nations peoples and communities, include the development of the National Aboriginal and Torres Strait Islander Health Plan 2021-2031 and the Disability Sector Strengthening Plan. These examples show what can be achieved when work is undertaken in genuine partnership with First Nations peoples, where co-design is based on empowerment, trust and mutual respect. The NIAA is supportive of further progress against NDIS recommendations leveraging the success of these experiences to effectively partner with First Nations peoples, peaks, and community to achieve systems level change for First Nations peoples with disability. Further, the NIAA is a member of the NDIA’s First Nations Advisory Council (FNAC) that commenced in March

  1. In line with Priority Reform 1, the Advisory Council is co-chaired by the NDIA and the FPDN; and aims to provide First Nations-led advice on what the NDIA can do to change and improve outcomes for First Nations peoples with disability. The NDIA is developing the First Nations Strategy and Action Plan, through a process of co-design with First Nations people with disability, communities, and sector representatives. The FNAC will act as an advisory body to guide this co-design process. The scope and role of the FNAC is to ensure the NDIA’s actions to improve outcomes for First Nations peoples with disability are guided by First Nations peoples and sector representatives at the highest level. Together with the Australian Government’s recognition of the need for

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place-based solutions in remote service delivery, this should bring improvements through working closely with First Nations peoples to access, engage or commission supports they require. The Australian Government also agrees the importance of investing in First Nations organisations and workforces in remote and very remote communities, and the need for place-based solutions [in remote Service Delivery], working closely with participants to access, engage or commission the supports they need.20 The NIAA suggests any response or action to NDIS Review ‘Recommendation 20 – to create a new compact between Australian governments’ – should consider alignment with arrangements under the Closing the Gap Priority Reforms.

Cultural Understanding

First Nations peoples’ cultural understanding of inclusion is different to Western concepts of disability. Western approaches often focus on medical diagnosis and what a person with disability cannot do. Instead, many First Nations peoples with disability and their communities prefer a holistic approach – considering the whole person (and family) and not just their disability. This is building a cultural model centred on inclusion. The final report of the Royal Commission also notes that many First Nations peoples with disability prefer a cultural model centred on inclusion. This approach recognises that inclusive participation in culture and community has a positive impact on social health and wellbeing. This moderates the harm of inequalities experienced in daily life rather than approaching disability from a medical model. The prioritisation of Western perspectives over First Nations cultural tenets has profound and compounding impacts on the immediate and long-term wellbeing of communities21. The NIAA consistently hears from community that service systems, including disability services, are inaccessible, unsafe or incomplete for an individual and community need. Understanding this impact is critical to understanding the strengths within the existing community support systems. Identifying barriers to peoples accessing resources ultimately informs understanding of how to improve outcomes for First Nations peoples with disability, their families and communities. The NIAA notes that the NDIS Review ‘Action 2.10 – to develop a national strategy to improve the quality of the disability ecosystem for First Nations peoples with disability’ – is aligned with the approach endorsed under Closing the Gap (with disability a cross-cutting outcome and national socio-economic targets and outcomes). The NIAA acknowledges the critical role the Aboriginal Community Controlled Sector will play in the delivery of NDIS services to First Nations peoples with disability and in partnering with mainstream to support a comprehensive service offer.

Cultural Safety

Cultural safety is a model of practice that respects everyone’s identity and human right to responsive, respectful, timely and accessible high quality care. ‘Culturally safe practice is the ongoing critical reflection of health practitioner knowledge, skills, attitudes, practicing behaviours and power differentials in delivering safe,

20 Submissions by the Australian Government in response to Counsel Assisting’s submissions in Public hearing 25, 14 December 2022, SUBM.0042.0001, p 15 [55] 21 ahrc_wiyi_yani_u_thangani_report_2020.pdf

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accessible and responsive healthcare free of racism’22. Cultural safety is determined by Aboriginal and Torres Strait Islander individuals, families and communities. Cultural safety involves an understanding that there are power relations in and between all cultural groups and at all levels. From this basis, services are able to work on addressing cultural inequities in health and disability in safe ways.23 Culturally safe service environments are welcoming for First Nations peoples. The visible presence of First Nations staff has been demonstrated to increase the accessibility of services by contributing to a sense of cultural safety. One witness explained to the Royal Commission that an absence of cultural safety creates risks that First Nations peoples will disengage from the NDIS, as well as creating barriers to using plans and receiving supports. Services that do not, or are yet to develop cultural safety practices, are at risk of indirectly discriminating against First Nations Australians by placing cultural barriers in the way of accessing the same services as other Australians. This is critical for rural, regional and remote locations where culture is strong and often discrimination is common. Lack of safety can incite fear and produce and provoke trauma. Unsafe practices can re-traumatise peoples and lead them to not to seek available supports. The Wangkiny Yirra ‘Speaking up’ research project identified the need for ‘greater inter-sectoral collaboration between systems and a stronger understanding of how trauma and family violence feed into the many interrelated issues women may have’. It found that cultural safety and trust were the ‘most important factors impacting women’s willingness to access a service related to their health and disability’.24 Many First Nations communities have a long history of trauma. An understanding of traumatic experiences underpins any consideration of mental health concerns and psychosocial disability in First Nations communities. Service models need to be founded on a rich understanding of the impacts of past and contemporary collective traumatic experiences endured by First Nations peoples. Signs of collective trauma include elevated rates of physical and sexual abuse, family and community conflicts, leadership challenges, demoralisation and widespread resource depletion. Responses are likely to be more effective when, rather than relying on individualistic approaches, collective worldviews that embrace local whole-of-community knowledge of truth telling and healing are also considered. The capabilities for cultural safety used in the health system would be well placed in all disability related service provision. These are:

  1. Respect: Recognise Aboriginal and Torres Strait Islander peoples’ ways of knowing, being and doing in the context of history, culture and diversity; and affirm and protect these factors through ongoing learning in health care practice.

  2. Communication: Engage in culturally appropriate, safe and sensitive communication that facilitates trust and the building of respectful relationships with Aboriginal and Torres Strait Islander peoples.

  3. Safety and quality: Apply evidence and strengths-based best practice approaches in Aboriginal and Torres Strait Islander health care.

  4. Reflection: Examine and reflect on how one’s own culture and dominant cultural paradigms, influence perceptions of and interactions with Aboriginal and Torres Strait Islander peoples.

    22 National Aboriginal and Torres Strait Islander Health Plan 2021–2031 | Australian Government Department of Health and Aged Care

23 National Strategic Framework for Aboriginal and Torres Strait Islander Peoples’ Mental Health and Social and Emotional Wellbeing 2017-2023 (niaa.gov.au)

24 Wangkiny Yirra “Speaking Up” Project: First Nations women and children with disability and their experiences of family and domestic violence | Royal

Commission into Violence, Abuse, Neglect and Exploitation of People with Disability

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  1. Advocacy: Recognise that the whole health system is responsible for improving Aboriginal and Torres Strait Islander health. Advocate for equitable outcomes and social justice for Aboriginal and Torres Strait Islander peoples and actively contribute to social change.25

An important aspect of cultural safety is understanding that cultural awareness must be community specific as cultural protocols vary from community to community and region to region. A key role of the NIAA is to support connecting relevant First Nations stakeholders with government and the service systems, to ensure local cultural requirements are met and considered. Access and Accountability, particularly in remote regions The Royal Commission heard there is an urgent need for locally based solutions to improve access to and utilisation of the NDIS in remote communities; and reduce reliance on market-based models where communities may require more tailored and fit for purpose models. The Royal Commission noted the substantial challenges in delivering services in remote communities, to ongoing service provision by existing providers and barriers to market entry for new providers. These challenges include:

  • a low number of participants;

  • uncertain demand;

  • high costs of service delivery;

  • language barriers;

  • housing shortages;

  • inadequate pricing models;

  • the absence of local workforces; and

  • the logistics of travelling to remote communities, including long distances, employee safety and limited accommodation options. As a consequence many communities experience ‘thin markets’ which creates a gap between the needs of participants and services available. The NIAA’s regional staff also identified a number of challenges faced by providers in communities, such as:

  • the difficulties faced with technology in remote areas, such as limited phone and internet access especially in the wet season;

  • road closures in the wet season;

  • occasional community unrest; and

  • sorry business closing communities. Some First Nations witnesses at the Royal Commission (public hearing 25 and throughout the inquiry), indicated disability services were poor or virtually non-existent in their communities. They described the difficulties they had in accessing supports, including:

25 Cultural Safety for Health Professionals - Health Professionals - Australian Indigenous HealthInfoNet (ecu.edu.au)

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  • A lack of locally based support workers, local First Nations NDIA and service provider staff;

  • Difficulty accessing GP’s, specialists and allied health services and support coordinators, particularly specialised support coordinators;

  • Difficulty accessing respite services, Supported Independent Living services and specialist disability accommodation;

  • Difficulty accessing adequate assistive technology and accessible transport;

  • Inherent tensions between holistic ‘family-centred’ service delivery and the transactional approach of the NDIS, which focuses on individual plans and goals;

  • The complexity of the NDIS;

  • A lack of knowledge and understanding of the NDIS within First Nations communities;

  • A lack of local NDIA presence;

  • A lack of cultural safety when engaging with NDIA employees, with witnesses saying NDIA planners have a lack of understanding of the importance of Country, culture and community, particularly in remote areas;

  • A lack of cultural safety when engaging with service providers;

  • Language barriers and low literacy and numeracy levels in remote regions; and

  • A lack of ability to participate in cultural life - participation in cultural life is equally essential for First Nations peoples with disability as social and economic participation, and this should be recognised in the context of the NDIS. Thin markets in remote communities create inequities, but not necessarily with the allocation of funding against a NDIS participant’s plan. Inequities are more likely to arise because funding allocated is underutilised.26 Growth by age cohorts for First Nations Australians will trend consistently over the coming decade. Currently there are 984,000 Australians who identify as First Nations (representing 3.8% of the total Australian population). Of these 118,173 (or 15.4%) live in remote and very remote areas. The proportion of the total population who are First Nations increases with remoteness. Importantly, one third are aged under 15 years and 5.4% are aged 65 years and over in remote Australia (ABS Census 2021 data). Under the NDIS, the location of a service affects its costs. The NIAA understands this means the more remote the service delivery area, the more expensive it is. The NDIS funding allocation reflects this (an additional 50% loading for very remote and 40% for remote participants for each eligible support in addition to the national non-Remote standard NDIS price rate per service). Service delivery in remote regions is hampered by lack of available services (primarily workforce), models of care that do not sufficiently acknowledge or account for cultural obligations of care; and a lack of suitable infrastructure in remote regions to support service delivery. The NIAA is supportive of further work to strengthen outcomes for First Nations peoples with disability, especially in remote Australia.

Care on Country

Anecdotally, the NIAA understands First Nations peoples make a choice between addressing health concerns and accessing services versus remaining on Country. The lack of services in remote regions often results in families having to move or split up to receive the care they need. One mother explained to the Royal Commission that:

26 The NDIS in Victoria Quantitative Report_09_September_2021.docx (unimelb.edu.au)

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“…her son is now receiving supports that he would not have been able to receive if he had remained [in community], however, she misses her son and wishes he could visit more…” explaining there are important cultural activities he needs to come back for. For those who make the decision to move off Country to access basic disability and care services there are cultural, social and wellbeing impacts, not all of which are positive. Delivery of disability services should support First Nations peoples wanting to return to Country to remain close to their homes and connected to community. For those who remain on Country, declining health, social, education and economic participation continue to have adverse impacts. The NIAA encourages the structuring of integrated care and support services for remote Australia around the eight characteristics of the Indigenous Primary Health Care model of accessible health services: community participation, continuous quality improvement, culturally appropriate and skilled workforce, culture, flexible approach to care, holistic health care, and self-determination and empowerment. Approaching service design and delivery, including ‘alternative commissioning arrangements for both First Nations communities and remote communities’ (NDIS Review Action 14.1 refers) is consistent with Closing the Gap. Approaches to alternate commissioning and partnership are already underway including the Alternative Approaches to Commissioning for Remote and First Nations Communities (for disability) and Integrated Care and Commissioning Pilots (for aged care services), both are being led by the Department of Health and Aged Care. The NIAA considers these programs are a good starting point to approaches to design and commissioning services for First Nations communities. The NIAA acknowledges there are other programs also underway that support partnering and delivery of disability and care services to First Nations communities. Further to these challenges is that in the absence of appropriate disability services, First Nations family members often care for those with disability. Without adequate support and capacity-building, they are vulnerable to carers’ burnout. Noting that 15% of First Nations Australians aged 15 and over provided unpaid assistance to a person with disability, long term health conditions or problems related to old age in 2021 (76,600 people)27. This forms part of cultural obligations for First Nations families and communities, however being cared for by a family member does not wholly align with the NDIS model. The NIAA suggests requirements around NDIS plans are conceived differently for First Nations peoples with disability to ensure choice for alternate care and support options are accessible. The NIAA is supportive of further exploration of more agile plan designs to ensure cultural care models are valued and incorporated into plans. This also speaks to NDIS participant choice being fully exercised. The NIAA also notes the NDIS Review findings that “the access and planning process uses a deficit model that is disempowering and counter to the vision for the NDIS to uplift and empower peoples with disability to participate socially and economically”. This is especially impactful for First Nations peoples with disability, many of whom have a long history of trauma.

Unmet need It will be critical to determine the level of unmet demand, to best understand the service needs for First Nations peoples with disability. Data from 2018-19 indicates that approximately 7% of the total number of Australians with disability identify as First Nations peoples (306,100) and 22% of First Nations peoples had a severe or profound disability (66,100)28. A significant gap between those with a disability and those registered with the NDIS and could be explored further. We note NDIS participant data that shows there were 46,694 First Nations peoples registered with the NDIS (at June 2023) - understanding that not all people would be eligible for an NDIS Plan. Further structural and system changes to the NDIS or disability services should be informed by a more complete picture of the needs and size of the First Nations peoples with disability population.

27 1.14 Disability - AIHW Indigenous HPF 28 National Aboriginal and Torres Strait Islander Health Survey (NATSIHS) 2018-19

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The NIAA notes there is likely a large cohort of First Nations peoples who have not had their disability status assessed because standardised assessment, application, plan design and reviews are not suited to a First Nations context and/or assessments are not available due to remoteness or gaps in the service system. In addition, there is a lack of trust resulting from legacy issues (colonisation and stolen generations and previous poor delivery of medical related services) which means First Nations peoples make a choice not to be assessed for, or access, disability services. As an example, NIAA staff in some regions note they are aware of a significant number of people who are likely eligible for NDIS support, but have not been assessed sufficiently or at all; and consequently are not currently receiving disability support. In many regional, and particularly remote, areas, the majority of NDIS service providers are fly-in fly-out, as the capability/expertise is not available on the ground. Communities have told the NIAA they want more local providers, including a sufficient number of local staff to ensure cultural representation (clan and language groups); indicating strongly that an 1800 number is not sufficient. The NIAA Regional Offices, including from the Central Australia region have heard from communities that NDIS participants living in remote communities express concerns that the scheme is too complex and difficult to navigate; that the transition to the NDIS is confusing; and delays in NDIS decisions are frustrating. Where place based approaches are implemented we see positive results. The Integrated Care Commissioning trials are an example of this.

Integrated care systems Many First Nations peoples with disability have complex needs, which requires effective collaboration across sectors to ensure adequate care. NIAA staff report that negotiating across multiple sectors is the daily experience for many First Nations families, and not a positive one. This requires a willingness to share information and clarity around respective roles across multiple sectors, such as:

  • state and Commonwealth government agencies;

  • Aboriginal Community Controlled Health Organisations;

  • GPs;

  • non-government organisations;

  • disability; and

  • justice and other service sectors. The NIAA is pleased to be involved in the Integrated Care Commissioning trials being undertaken by the Department of Health and Aged Care. These trials are exploring new approaches to building a stronger, sustainable care and support sector. These are currently being rolled out in Longreach, the Kimberley, NSW South Coast and Gippsland regions. This approach is bringing together Australian Government investments and resources across the aged care, disability support and veterans’ care sectors (with interfaces to primary health, allied health, mental health) to join-up and better align service systems; and build a consolidated and more sustainable care sector. This will be achieved by:

  • integrating care to build larger health and care systems to pool resources, enable a more flexible care model and make better use of all workforce and infrastructure opportunities; and

  • engaging with community to identify locally-led, place-based solutions or proposals for integrated care within local markets. The 2023-24 Budget included an investment of $27.0 million over 4 years to expand the Integrated Care Commissioning trials to a total of up to 10 locations. Expansion of the Integrated Care Commissioning trials will

Inquiry into NDIS participant experience in rural, regional and remote Australia 15

further address supply gaps and shortages in the care and support sector; and identify where access to culturally appropriate services can be improved for First Nations communities.

Language barriers The NIAA’s regional staff have noted a need for production of materials in First Nations languages for NDIS clients, the community and the service sector. Information and tools are needed in both written and audio formats. As an example, the NIAA Regional Office in the Arnhem Land and Groote Eylandt region compiled local data from the 2021 Census finding: approximately 12,479 people in the region (93% of the Indigenous population) identified as speaking an Indigenous language at home, with English being spoken as (at least) a second or third language. It is common to come across people, particularly in bigger communities like Maningrida, who speak more than 5 Indigenous languages and dialects. In the region, 2,329 people identified as speaking poor English, highlighting there are additional translation services and language providers needed in the region. The NDIS Review ‘Recommendation 23 – Measure what matters, build an evidence base of what works, and create a learning system’ aims to ensure all people with disability are able to ‘access and understand information relevant to them’ and begin ‘collecting, reporting and publishing against’ a range of characteristics. For First Nations peoples with disability it will be important to reflect data sovereignty requirements, the need for materials to be accessible in language and for collection to be culturally appropriate. The NIAA welcomes further opportunities to support understanding requirements to ensure disability services, systems and data are accessible for First Nations peoples with disability.

Place-based, community led care The Royal Commission heard that to access and utilise the NDIS in remote communities there is an urgent need for locally based solutions and a reduced reliance on market-based models where communities require more tailored and fit for purpose models. Community led solutions were discussed during the Royal Commission (public hearing 25). Mr Griffis, CEO, FPDN and Ms Riemer, Deputy CEO, FPDN said remote communities required education and training in a ‘whole of community approach’ which Ms Riemer said could involve asking: “What is already in the community, what can be developed, what are the skill sets already there? How can further skill sets be developed? What needs to be done to sustain that community for individuals to stay and live on Country and be backed by, you know, appropriate block funding or other funding mechanisms to support people to stay on Country”.29 Legislation passed in early 2022 to subsection 14(2)(a) in the National Disability Insurance Scheme Amendment (Participant Service Guarantee and Other Measures) Act 2022 (Cth) appears to allow greater flexibility in how the NDIA may provide funding in markets such as remote and very remote communities.30 Section 14 should assist in achieving sustainable improvements by enabling First Nations communities to develop solutions in hand with government. DSS and the NDIA have been consulting the NIAA as they develop alternative approaches to NDIS service commissioning in critically thin markets. In August 2023, the Hon Bill Shorten MP, Minister for the NDIS announced Maningrida in the Northern Territory as the first of two Alternative Commissioning trial sites. This includes the allocation of $7.6 million to pilot an approach to improve NDIS service gaps in First Nations, remote and very remote communities.

29 Transcript, June Riemer, Public hearing 25, 14 July 2022, P-271 [8–12] 30 National Disability Insurance Scheme Act 2013 (Cth), s 14; Explanatory Memorandum, National Disability Insurance Scheme Amendment (Participant Service Guarantee and Other Measure) Bill 2021 (Cth), pp 35–36

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The alternative commissioning trial is being developed and piloted in partnership with First Nations representatives and remote communities to ensure the pilot is culturally appropriate and underpinned by an understanding of community strengths and preferences. This work is in line with recommendation 14 of the NDIS Review. These solutions will be co-designed from the ground up through collaboration with community. Community Development Program (CDP) services in the region can be leveraged to support capability uplift of the current workforce and latent workforce entering the sector. An increase in market certainty to the area has potential to create job opportunities within a latent workforce.

Data

The NIAA’s regional staff have identified a greater need for clear data and practical data translation to identify gaps and needs in NDIS client servicing; and for local workforce planning in remote regions. Data needs to accurately indicate the market gaps and unmet demand in a community. If collective client funding data was available for a community or region, this could support local workforce planning and response. Current data also doesn’t capture how much of the expenditure is the service delivery itself, or the costs associated with service delivery, such as travel and accommodation. Adding in the cost of airfares, plus accommodation is a significant proportion of costs to deliver services in remote regions. For example, a one way airfare from Darwin to Arnhem Land could be anywhere from $600 to $1600.

Accountability and Quality Safeguards

The NIAA’s regional staff have also noted that currently, the major accountability mechanism for service quality and integrity within the NDIS in remote Indigenous communities is the NDIS participant and their family only. In many remote communities, where disability supports have been largely absent, communities do not yet know what good services could look like and are not well positioned to advocate for their own services or to hold service providers to account. Disability participants and families are left exposed to the risks of a culture of low expectations, exploitative practices and poor-quality services. This important point needs further investigation by DSS and the NDIA to develop stronger safeguards. Safeguards must be designed in consultation with First Nations peoples.

A way forward on NDIS access in remote Australia The NIAA will continue to work closely across relevant Commonwealth agencies to renew a focus on place-based and regional solutions with a ‘caring through culture’ approach to ensure effective services for First Nations peoples with disability, their carers, families and communities. Place-based and regional approaches offer efficiencies, especially for remote communities, and consideration should be given to ‘hub and spoke’ models that are scalable and agile. These could focus on continuity of services, especially in remote communities; and for some communities this could see cross-sectoral, multi-disciplinary teams in place. It could include integrated program funding and allow for a coordinated approach across government and service providers; and give clarity to community on what services are available and how to access them. The NIAA is contributing to work being undertaken by the Commonwealth and state and territory governments to develop the National Care and Support Economy Strategy that seeks to coordinate reform across the care and support economy, with a focus on the needs of First Nations Australians. This is an opportunity to identify how best to deliver an integrated care and support service system (covering early childcare, aged care, disability and veterans’ care) which is scalable and delivers an efficient and innovative service. In doing so, this will tackle long

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held barriers such as thin geographic and cultural markets (services that are culturally safe). It will leverage a First Nations workforce to yield better results and benefits to First Nations in rural, regional and remote Australia. The NIAA considers the successful realisation of this effort will support growth in the First Nations business sector that is responsive to the needs of First Nations peoples with disability and strengthen economic empowerment, especially in remote Australia.

Building the Community Controlled Sector and

First Nations Workforce

Both the Royal Commission and the NDIS Review have made recommendations identifying the advantage in building the First Nations community controlled sector, to support better access to disability services for First Nations Australians with disability. This aligns with Closing the Gap Priority Reform 2, Building the Community Controlled Sector, on the basis that a community-controlled organisation implicitly recognises the strength, the expertise and the right to self-determination by Indigenous communities – and usually achieves better results for community, including employing more First Nations peoples. The NIAA Remote Employment Taskforce continues to work with relevant key Commonwealth agencies to strengthen the First Nations Care and Support Workforce to ensure appropriate policy links are established between and across programs. The aim of this work is to improve employment pathways and opportunities for First Nations peoples living in remote communities and participating in the Community Development Program, and the New Jobs Program, when it is established. There are future opportunities for the New Jobs Program to support improved access to NDIS services for First Nations peoples in remote communities, through first supporting participants into community funded jobs, then connecting them into a Government funded or private sector job, for example in the care and support sector. An increasingly skilled remote workforce that is able to deliver culturally safe care services will help to address existing service gaps and contribute to improved choice for NDIS clients. The NIAA’s Regional staff have noted that barriers persist for local people in remote locations to access and pass the NDIS Worker Screening Check, including the capacity to meet the 100 identity point requirements. Many people in remote locations do not have their Birth Certificate or other standard identity paperwork and struggle to meet these requirements. The NIAA welcomes the recommendations of the NDIS Review relating to the building the capacity and capability of community controlled organisations and the First Nations service sector to deliver services for First Nations peoples with disability.

The Justice System and the NDIS

There is a striking over-representation of people with disability, especially First Nations peoples, in the criminal justice and corrections systems31. The evidence base indicates disability among First Nations youth and adults is often criminalised. Preventing the criminalisation of First Nations peoples with a disability is a key factor in addressing and preventing interaction with the justice system. This is reflected in Closing the Gap socio-economic targets 10 and 11 (of 17)32 that seek to reduce the overrepresentation of adults and young people in the criminal justice system.

31 3861 - The Criminal Justice System Issues Paper.pdf (lawcouncil.au)

32 Closing the Gap targets and outcomes | Closing the Gap

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There is currently a gap between services available to support adults and young people with disability to prevent early intersection with the justice system. There is also a need for the justice system to provide adequate support for people in incarceration with a disability, cognitive impairment or mental illness. The Royal Commission made 24 recommendations about criminal justice including, screening, identifying and diagnosing disability, ensuring access to the NDIS, implementation of national principles relating to cognitive or mental health impairment. It also highlighted the increased importance of accessible and culturally appropriate diversion for people with cognitive disability from criminal proceedings in regional and remote areas. The Royal Commission noted it is vital to invest in specific, disability-related measures to prevent First Nations peoples with disability, particularly children, from entering the criminal justice system. This will address custodial and non-custodial support needs and ensure that First Nations status does not result in disability needs becoming less of a priority. The Report notes the over-representation of people with cognitive disability in the criminal justice system, with a particular need for disability diversion programs in regional and remote communities. Evidence shows that people who have physical or cognitive disability or mental illness, need complex additional support such as coordinated, multidisciplinary assessment and intensive treatment. Under the Indigenous Advancement Strategy (IAS) the NIAA administers funding for adult and youth through-care programs. These programs are voluntary (participants need to opt in) and provide intensive case management during the pre-release and post-release phases to address needs of First Nations detainees. Through-care services aim to support reintegration into the community and reduce the risks of re-offending. Few through-care service providers employ case workers with a suitable specialisation background or knowledge of the NDIS, which creates a service gap for the people in detention with a disability. Prisons and the NDIS need to share the responsibility to deliver services and provide access to adequate support for people with a disability in incarceration. One suggestion is a Memorandum of Understanding between the NDIA and prisons and corrective services. The purpose would be to ensure that an NDIS assessment and support is undertaken before release, allowing case workers to create a more holistic plan and to reduce support gaps. The NIAA notes that the NDIA has established a new specialist Justice Planning project that has conducted a First Nations engagement session. The IAS funded through–care services are currently being evaluated to look at how the co-designed model of First Nations through-care is being delivered by providers and whether the service is meeting client and stakeholder needs.

Conclusion

The outcomes of the NDIS Review and Royal Commission offer real potential, but also real challenges for government in implementing services that work for First Nations peoples with disability. All efforts to do so will make a strong contribution to Closing the Gap, the priority reforms and outcomes and targets – in line with the commitment by all governments to do so. Ensuring the NDIS and the disability ecosystem delivers sustainable and enduring access to choice and equitable services for First Nations peoples with disability, especially in remote Australia, should be a key focus for the NDIS moving forward. The NIAA believes that to meaningfully tackle the challenges of NDIS reforms, working to all four Priority Reforms33 under the Closing the Gap will be key to delivering success, and ultimately improving outcomes for First Nations peoples with disability.

33 Priority Reforms | Closing the Gap

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Attachment A Table 1. NDIS Review - First Nations recommendations and actions

Recommendation Action

Recommendation 2 - Increase the Action 2.10 - The Australian Government should develop a national strategy to scale and pace of change in improve the quality of the disability ecosystem for First Nations people with mainstream and community inclusion disability and accessibility and improve the connection between mainstream services and the NDIS

Recommendation 14 - Improve access Action 14.1 - The National Disability Insurance Agency, in partnership with First to supports for First Nations Nations representatives, communities, participants and relevant government participants across Australia and for all agencies should progressively roll-out alternative commissioning arrangements participants in remote communities for both First Nations communities and remote communities, starting as soon as through alternative commissioning possible. arrangements Actions for recommendation 14

Recommendation 20 - Create a new Action 20.4 - National Cabinet should develop a dedicated First Nations Schedule compact between Australian under the new Disability Intergovernmental Agreement to embed a First Nations governments Disability Forum and an independent sector-specific accountability mechanism.

Recommendation 23 - Measure what Action 23.5 - The Australian Government should ensure that all disability matters, build an evidence base of reporting mechanisms facilitate the collection, analysis and publication of what works, and create a learning intersectional indicators. This includes: system All people with disability should be able to easily access and understand information that is relevant to them. This means that all data and reporting mechanisms across the disability ecosystem must begin collecting, reporting and publishing against intersectional characteristics including First Nations, culturally and linguistically diverse, LGBTIQA+SB, gender and age as a minimum standard.

Recommendation 26 - Develop an Action 26.1 - National Cabinet should agree and publish an implementation implementation roadmap that factors roadmap. Including:

in critical dependencies and risks and    •  Effective NDIA commissioning capability is necessary to deliver key services,

ensures a smooth transition for including Navigators, Specialist Navigators, and lead practitioners. There is a existing participants *Legislative significant dependency on the NDIA having the capacity and capability to change required commission services to meet participants’ needs and to partner with First Nations communities to enable community-led commissioning.