‘Faceless monster, secret society’: Women's experiences navigating the administrative burden of Australia's National Disability Insurance Scheme

Abstract

Administrative burden on citizens who receive various forms of social and financial support from governments is a growing area of interest and concern for scholars of public policy and administration (Carey et al., 2021;Döring, 2021;Herd & Moynihan, 2019). Scholars are concerned with how excessive or cumbersome administrative burdens and processes are being used strategically as 'policy making by other means' (Herd & Moynihan, 2019). Moreover, these burdens tend to be inequitably distributed, thereby entrenching existing social inequalities (Carey et al., 2021;Chudnovsky & Peeters, 2021;Herd & Moynihan, 2019). This paper examines the experiences of women with disability, who are a marginalised group (UN Secretary-General, 2017), navigating the Australian National Disability Insurance Scheme (NDIS). It explores what these experiences tell us about administrative burdens and their construction within the NDIS and, in turn, personalisation schemes more broadly as they relate to women.Previous research has indicated that administrative burdens may be particularly high in personalisation schemes such as the NDIS, because these schemes are predicated on very high levels of selfadvocacy (Carey et al., 2019;Glendinning et al., 2008;Needham & Glasby, 2015). Within the personalisation model, which is growing internationally (Needham & Glasby, 2015), individuals must articulate their goals and needs to street level bureaucrats . The more successful they are at articulating these needs in a way that aligns with 'the system' or bureaucrats' worldview, the more likely they are able to receive larger or better-tailored plans (Carey et al., 2021). For example, Mavromaras et al. (2018) found that people with advocates received larger plans within the

“Most people don’t like a client group that tell you to get fucked”: Choice and control in Australia’s National Disability Insurance Scheme for formerly incarcerated people

“…It is well established that the NDIS can be challenging to navigate (Carey et al, 2021; Yates et al, 2021a), with issues evident at many different parts of the care planning process and in securing appropriate supports (Sotiri and Russell, 2020). While the ethos that individuals should have choice and control over their services is theoretically compelling, as our findings demonstrate, people with disability need significant support to make a reality of this.…”

A decade on: The achievements and challenges of the National Disability Insurance Scheme's implementation

“…In our own research incorporating the lived experience of NDIS participants (e.g. Dickinson et al, 2021, 2022; Yates, Carey, et al, 2021, 2022; Yates, Dickinson, et al, 2021), we have heard from people whose lives have been completely transformed through the NDIS, those who appreciate the extra funding they have been able to access but have nonetheless experienced many difficulties, and those who report being underserved and needing to fight for everything they receive. Some were happy and grateful for what they had been able to receive and the outcomes for their lives and those of their families, while others reported frustration, anger, despair, disempowerment and a feeling that interacting with the NDIS constituted ‘a full time job’ (see e.g.…”

“…Some were happy and grateful for what they had been able to receive and the outcomes for their lives and those of their families, while others reported frustration, anger, despair, disempowerment and a feeling that interacting with the NDIS constituted ‘a full time job’ (see e.g. Yates, Carey, et al, 2022). Importantly, some had been able to use their education or administrative skills to make the system work smoothly and flexibly for their needs (or managed to access supports who could help them do this), while others found the learning, compliance and psychological costs too high and were not able to turn the system to their advantage.…”

“…Smith‐Merry et al (2023) argue that addressing equity issues for Indigenous people requires whole‐of‐life case management from Indigenous‐controlled service providers. Other marginalised groups potentially disadvantaged through the scheme include women and girls (Yates, Carey, et al, 2021, 2022), people involved in the criminal justice system (Spivakovsky, 2021; Yates, Dodd, et al, 2022), people from culturally and linguistically diverse backgrounds (Senaratna et al, 2018); and people with psychosocial disabilities (Devine et al, 2022).…”

Administrative Burden in Citizen-State Interactions: A Systematic Literature Review

“…With few exceptions, studies find that encountering state barriers is associated with experiences of learning and compliance costs. Examples of learning costs are learning about requirements (Cook 2021), misinformation (Chudnovsky and Peeters 2021a), and how to redeem vouchers (Barnes 2021), while compliance costs include transportation time to vaccinator camps (Ali and Altaf 2021) and completing forms (Yates et al 2021). Most studies are conducted in means-tested programs where learning and compliance costs arise as a consequence of (eligibility) requirements.…”