NDIA Accountability Project

NDIS access and support for First Nations people

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National Disability Insurance Scheme

Amendment (Getting the NDIS Back on Track No.

  1. Bill 2024

Submission by the Institute for Urban Indigenous Health (IUIH) to the Community Affairs Legislation Committee

May 2024

Prepared by:

  • Institute for Urban Indigenous Health
  • Address: 22 Cox Road, Windsor QLD 4030
  • Telephone: 07 3828 3600
  • Email: policy@iuih.org.au
  • Website: iuih.org.au

Introduction

The Institute for Urban Indigenous Health (IUIH) welcomes the opportunity to provide a submission in response to the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 (the Bill).

IUIH was established in 2009 as a regional strategic response to the significant growth and geographic dispersal of Indigenous people within South East Queensland (SEQ). As one of Australia’s largest Aboriginal and Torres Strait Islander Community Controlled Health Organisations (ATSICCHOs), IUIH represents a network of five ATSICCHOs in SEQ, one of Australia’s largest and fastest-growing Indigenous regions, and home to 41% of Queensland’s and nearly 12% of Australia’s Indigenous population. Since 2011, the IUIH Network footprint population has dramatically increased from 59,483 people to an estimated population of 129,224 in 2023.

The IUIH Network provides care to around 40,000 regular Indigenous clients through 19 comprehensive primary care clinics operated by IUIH Network member organisations in SEQ. The IUIH Network aims to achieve family wellness through a one-stop-shop model of integrated health and social support services for First Nations families. Care coordination is embedded within the IUIH System of Care (ISoC), which is a nationally acclaimed and independently validated model shown to close the gap faster. In a ground-breaking approach to systems design, ISoC supports new care pathways, pioneering an interwoven and seamlessly navigable co-location of preventive health, chronic disease care, mental health, aged care, disability, child care, legal, child protection, family wellbeing, domestic violence, and social services - spanning the entire life course.

IUIH is also a registered National Disability Insurance Scheme (NDIS) provider. In 2019, the National Disability Insurance Agency (NDIA) funded IUIH to conduct an NDIS Pilot Project of National Significance (NDIS Pilot). The duration of the Pilot Project was from April 2019 until end of August 2020. During that period, IUIH was to achieve 500 “access met” outcomes for First Nations people living with disability; and to achieve 500 “plan approved” outcomes (not necessarily for the same 500 access individuals). Analysis by the NDIA showed that the NDIS Pilot achieved an astonishing 3 times better ‘access met’ rates and 10 times better ‘plan approval’ rates compared to standard NDIS arrangements. Furthermore, the overwhelming experience of the 900 First Nations people engaged by IUIH in the NDIS Pilot was that they would not have accessed needed disability supports if left to the usual mainstream NDIS pathways.

IUIH continues to support First Nations people with a disability to access the NDIS, develop their NDIS plan and connect with a service provider to activate their plan. IUIH’s Disability Services Team provides support coordination and allied health services. In 2022/23, IUIH supported 285 First Nations people to access the NDIS and delivered Support Coordination to 166 First Nations people and allied health services to 38 First Nations people.

1 IUIH projections based on 2021 Census data. ABS population projections based on 2016 Census data projected that the SEQ Indigenous population would reach 130,000 by 2031. Revised ABS projections are anticipated in 2024.

Changes to Access and Plan Reassessments

IUIH is concerned with the current arrangements under the NDIS Framework, particularly the fact that Needs Assessment outcomes are not deemed a ‘Reviewable Decision’ under Section 99 of the Bill. This means that if the process and outcomes do not meet the needs of the individual, they cannot be challenged. Additionally, decisions may be made without recognition and understanding of First Nations peoples’ culturally specific concepts of care, disability, and community obligations. This lack of cultural understanding could result in inappropriate levels or types of support, further disadvantaging First Nations participants.

To address this, there must be a mechanism or separate pathway that allows First Nations people to navigate this process with the support of First Nations organisations, ensuring that their specific needs and cultural contexts are adequately considered. Within the new approach to new Framework NDIS Plans, ATSICCHOs are best placed to support the access and needs assessment processes of First Nations people, ensuring that NDIS Plans are appropriately tailored to the unique circumstances of First Nations people with disability.

IUIH is also concerned about the legislative changes that will grant the NDIA the authority to request information or reports to assess a person’s ongoing eligibility, including requiring an examination by an appropriately qualified professional. Although the Explanatory Memorandum states that individuals can choose the professional who conducts the examination or assessment, there is a significant risk that they may not have timely access to a culturally safe provider, jeopardising their access to the NDIS.

There is an opportunity for the government to invest in ATSICCHOs to deliver alternative models of care, such as those using First Nations Allied Health Assistants to meet the increased demand on providers under the new approach to NDIS Plan reassessments. IUIH is already at the forefront of this approach, training and employing Allied Health Assistants who provide culturally safe allied health supports. This approach has proven to be an effective solution for addressing workforce shortages in the allied health sector.

The new approach to NDIS plan reassessments underscores the critical importance of dedicated support coordination for First Nations people with disabilities. However, IUIH has observed that NDIA Planners are consistently not including ‘coordination of supports’ in NDIS plans of people classified as having ‘low’ or ‘intermediate’ support needs, with some indication that there is a ‘blanket ban’ on this support. A person classified as having low or intermediate support needs does not equate to not requiring assistance with coordination of supports. A person’s age, vulnerability, and the nature of their disability can impact their ability to self-manage coordination of support.

IUIH has also observed the immediate adverse effects of this on First Nations people, leading to underutilised and under-funded NDIS plans. In IUIH’s experience, all First Nations people with disabilities require coordination of supports in their NDIS plans. This not only ensures that First Nations individuals receive appropriate support but also protects them from potential exploitation. The new ‘navigator’ function within the new NDIS structure, is not an adequate solution for First Nations people with disabilities.

‘Culturally Thin’ Markets in Urban First Nations Communities

ATSICCHOs offer high-quality, integrated, and culturally-centered care services that meet the specific needs of their communities. Uniquely positioned to provide disability supports, these organisations align with the expressed desires of First Nations people for self-determined care.

IUIH has demonstrated considerable success in delivering a dedicated end-to-end First Nations pathway, a model that has proven effective and should be embedded within the broader NDIS system. Scaling up the IUIH Model presents a significant opportunity to address the high number of unutilised plans2 and unmet needs within the SEQ First Nations community, ensuring that more individuals receive the support they require.

IUIH commends the government for attempting to reflect the Independent NDIS Review’s (NDIS Review) Recommendation 14 to ‘Improve access to supports for First Nations participants across Australia and for all participants in remote communities through alternative commissioning arrangements’. Section 32H provides that the reasonable and necessary budget may specify that funding (either flexible funding or funding for a stated support) will only be provided where certain requirements are met. The Explanatory Memorandum provides further guidance on these changes, noting that:

‘In addition, these provisions are intended to support future reforms to the NDS, including a new early intervention pathway and alternative commissioning. For example, NDIS rules may specify what evidence-based supports are appropriate for children under nine years of age with developmental delay. The rules could also specify particular supports in a remote First Nations community that have been codesigned with that community through an alternative commissioning approach.’

However, in its current form, the Explanatory Memorandum does not give full effect to Recommendation 14 of the Final Report of the NDIS Review, which also notes that ‘even in towns and cities, many NDIS services are not culturally appropriate for First Nations people with disability. As a result, First Nations participants may need to choose between supports that are not culturally safe or not getting funded supports at all.’ Recognising and acknowledging the challenges of remote service delivery, urban environments present a ‘thin market’ for First Nations people attempting to access disability services and supports. While urban areas may have a higher concentration of mainstream providers, these services are often more difficult for First Nations people to access due to several factors:

  • Navigational Barriers: First Nations individuals and families often find it challenging to navigate complex systems to access care. The process of completing forms and providing necessary documentation can be overwhelming, leading many to give up or be deprioritised in the system.
  • High Demand and Accessibility: The high demand for services in urban areas means that those who are most able to advocate for themselves tend to be prioritised. This leaves many First Nations people, who may lack the same advocacy skills or resources, struggling to access necessary care.
  • Cost Barriers: The cost of services, including transportation costs, can be prohibitive for many First Nations individuals and families, further limiting their access to care.
  • Cultural Responsiveness: While mainstream providers are available, they frequently fall short in delivering culturally responsive care. Efforts to improve the cultural responsiveness of the NDIS

System

Such as the introduction of First Nations Local Area Coordinators within ‘Partners in the Community’ organisations, remain inadequate. These roles, embedded within a mainstream system, often lack the trust of First Nations people and do not possess the necessary skills and capacity to support their needs. With the introduction of the new ‘Navigator’ roles, First Nations people are even more concerned about the inability of the NDIS to meet the holistic needs of First Nations people.

In contrast, Aboriginal Disability Liaison Officers, integrated within a primary health care model within ATSICCHOs, are trusted members of the community, understand the needs of First Nations people with disability and provide more effective and person-centred support. Although there is a government push for mainstream providers to become more culturally appropriate, commitments under the Closing the Gap Agreement to increase investment in the Aboriginal and Torres Strait Islander Community Controlled Sector reflects the established evidence base that community-controlled organisations are more accessible and deliver better outcomes for First Nations people, and that in most cases First Nations people prefer to access community-controlled care.

The Mid-Term Review of the National Health Reform Agreement Addendum 2020-2025 highlighted the importance of better integration between health, aged care, and disability services across all communities—urban, rural, and remote. To leverage this opportunity, it is essential that NDIS legislation explicitly enables alternative commissioning models for First Nations people in all settings. This legislative change is crucial to ensure equitable access to care for First Nations populations regardless of their location.

In line with the Final Report of the NDIS Review, approaches to commissioning must also be designed in partnership with First Nations communities, focusing on sharing decision-making, community-led design and implementation, sustainable and embedded place-based governance arrangements, and accountability to the National Agreement on Closing the Gap.

Community Controlled / Indigenous-led Commissioning models have proven to be effective in facilitating accessible and culturally appropriate care for First Nations people. Progressing alternative commissioning arrangements for First Nations populations in urban environments is critical, as the majority of Australia’s First Nations population resides in these areas. Implementing such models is necessary to see substantial and overall improvement in access measures. IUIH’s Commissioning Framework, currently in development, establishes the principles guiding our commissioning approach, ensuring alignment with our organisational strategy, vision, and purpose. It explains the commissioning cycle and the activities supporting a community-controlled model, articulates the competencies we aim to achieve, and communicates our obligations to the community and member organisations as well as our accountabilities to funders. Additionally, it describes our collaborative approach with stakeholders and outlines the governance structures that support our commissioning activities.

Closing Remarks

IUIH is dedicated to working collaboratively with all levels of government to ensure that the NDIS legislation effectively meets the needs of First Nations people with disabilities in SEQ. We believe that co-designing commissioning approaches with First Nations communities in SEQ is essential to achieving meaningful and sustainable improvements in service delivery. IUIH recognises that the real impact of the legislative changes, will largely be determined by the new NDIS rules. IUIH welcomes the opportunity to work closely with government to ensure that the NDIS rules are appropriately amended to reflect the needs and aspirations of First Nations people with disability in SEQ.

We appreciate the government’s consideration of our submission and remain available to provide further clarification or engage in more detailed discussions on any of the points raised.

Sincerely,

Adrian Carson Chief Executive Officer Institute for Urban Indigenous Health

Attachment A – IUIH Network and Clinics