Author: Kathy Boschen
Boschen, Kathy, 2025 NDIS Participants with Psychosocial Disabilities: Investigating their Formal Supports Following a Life-Limiting Diagnosis, Flinders University, College of Medicine and Public Health
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The National Disability Insurance Scheme (NDIS) has supported Australians with disabilities for almost a decade. Approximately 4.4 million Australians live with disabilities. Projections indicate the number of NDIS participants will reach 1,030,337, with 86,712 participants with primary psychosocial disabilities (PwPDs) being supported by the NDIS by 2033. To ensure the sustainability of the NDIS, Australian Governments have agreed that where services are best funded under universal service obligations or via another service system, such as health or mental health, the NDIS will not fund those supports. However, there is an expectation that NDIS participants will be supported seamlessly across service systems. The Applied Principles and Tables of Support (APTOS) loosely describe these agreements and responsibilities.
Many NDIS participants are likely to be diagnosed with life-limiting conditions necessitating support from multiple systems, particularly within the health, mental health and disability sectors. This research found that there has been limited exploration of how formal support systems plan to assist NDIS participants once they develop life-limiting conditions, particularly those without pre-existing physical disabilities. There is substantial confusion in the disability, mental health and health sectors about how to support PwPDs when they experience functional declines associated with life-limiting conditions, and the NDIS has created a more complex end-of-life experience for them.
This research’s significant and original contribution to knowledge is its detailed analysis of the types of support that formal systems currently provide PwPDs and life-limiting conditions, whether the support ensures equity and seamlessness between systems, and identifies the gaps and barriers that are likely to impact their experiences as they are dying. Further, this research highlights the specific support that PwPDs and their informal and formal supports feel will be necessary to improve their end-of-life experiences. This research exposes the nationwide cross-sector confusion about applying the APTOS. Finally, the research findings regarding the gaps between systems, barriers to optimal support during life stages, and issues regarding the marketisation of disability support created by the NDIS should inform policymakers internationally as they consider introducing more person-centred approaches to disability support.
Health and human services within Australia are siloed, and the NDIS has created another silo for participants to navigate. Additionally, while positive experiences were reported, there is an over-reliance on advocacy and the goodwill of the workforce; positive outcomes are “a happy accident”. The research found inequity in support around life-limiting conditions and substantial gaps between systems. NDIS does not fund case conferencing for most NDIS participants, contributing significantly to the gaps and barriers experienced by PwPDs. Research interviewees also reported significant issues with the quality of NDIS supports and nefarious NDIS providers.
The National Disability Insurance Agency communicates poorly with PwPDs and their informal and formal supports, lacks transparency and provides inconsistent planning outcomes. There is limited understanding of and significant confusion and divergent opinions about what supports each system offers and why. The guidance found in the APTOS regarding system responsibilities is unclear, leading to potential and actual poor outcomes for PwPDs and life-limiting conditions. In line with the recent NDIS Review: Working together to deliver the NDIS, this research recommended that the APTOS be replaced, and Australian governments should enter into new agreements where each system’s funded supports should be clearly mapped, including the Review’s proposed foundational supports. Additional recommendations include case-management funding in NDIS plans, particularly following diagnoses of life-limiting conditions, capability uplift across all systems, and trusted worker portability to ensure that PwPDs have end-of-life experiences not vitiated by poor communication and gaps between systems.
Keywords: National Disability Insurance Scheme, NDIS, psychosocial disabilities, life-limiting conditions, mental health, palliative care
Subject: Disability Studies thesis
Thesis type: Doctor of Philosophy
Completed: 2025
School: College of Medicine and Public Health
Supervisor: Professor Sharon Lawn