“…Our analysis further suggests that the care of people with profound intellectual disability and multiple chronic and complex conditions is delivered at a nexus between economic rationalism and full participation. The NDIS seeks to ration care using an approach of dedifferentiation in which all people with disabilities are assumed to have equivalent physical and intellectual capacity to make decisions about and to manage their own care [14,38]. The underlying assumption is false and can have severe adverse consequences-including potentially avoidable death-for people with profound intellectual disability.…”
People with intellectual disability are accommodated and cared for in a variety of settings in Australia. Direct care is delivered by a mixture of qualified health professionals (nurses) and unlicenced disability support workers in varying combinations depending on the complexity and chronicity of comorbidities experienced by people with intellectual disability. Although some of these disability services continue to employ registered nurses, the size and specialised education of this workforce is decreasing due to a myriad of policy changes, which has the effect of compromising continuity of care and adverse effects on health outcomes. The objective of this study was to compare the differences on the financial cost of a single case using different models of care with, and without, specialised registered nursing input. The single case had profound intellectual disability and multiple chronic and complex health problems and was cared for by a model that included 24 h registered nurse care and support. Four financial scenarios are presented, and the differences both in terms of actual cost, and potential health outcomes are discussed. This study has set the scene for a large study where health economic data can be compared against multiple cases, across a range of care contexts, in order to advance evidence about which models provide the better health outcomes for people with intellectual disability and associated multiple chronic and complex health problems.
“…Our analysis further suggests that the care of people with profound intellectual disability and multiple chronic and complex conditions is delivered at a nexus between economic rationalism and full participation. The NDIS seeks to ration care using an approach of dedifferentiation in which all people with disabilities are assumed to have equivalent physical and intellectual capacity to make decisions about and to manage their own care [14,38]. The underlying assumption is false and can have severe adverse consequences-including potentially avoidable death-for people with profound intellectual disability.…”
People with intellectual disability are accommodated and cared for in a variety of settings in Australia. Direct care is delivered by a mixture of qualified health professionals (nurses) and unlicenced disability support workers in varying combinations depending on the complexity and chronicity of comorbidities experienced by people with intellectual disability. Although some of these disability services continue to employ registered nurses, the size and specialised education of this workforce is decreasing due to a myriad of policy changes, which has the effect of compromising continuity of care and adverse effects on health outcomes. The objective of this study was to compare the differences on the financial cost of a single case using different models of care with, and without, specialised registered nursing input. The single case had profound intellectual disability and multiple chronic and complex health problems and was cared for by a model that included 24 h registered nurse care and support. Four financial scenarios are presented, and the differences both in terms of actual cost, and potential health outcomes are discussed. This study has set the scene for a large study where health economic data can be compared against multiple cases, across a range of care contexts, in order to advance evidence about which models provide the better health outcomes for people with intellectual disability and associated multiple chronic and complex health problems.
“…This demonstrates a challenge faced by the NDIA in assuming a social model of disability. The social model closely aligns with the capacity building and productivity insurance logic (Carney et al, 2018, p. 802), but proves unsustainable with eligibility criteria employing ‘a standardised, medicalised, and deficit understanding of disability’ (Horsell, 2020, p. 4). To be understood as a reasonable consumer in relation to this criterion, it must be established that WRMF is anomalous and unlike others, due to her impairment:the circumstances which unfortunately affect [WRMF] herself are, to say the least, very unusual.…”
National Disability Insurance Scheme (NDIS) funding rules determine who can access which supports.However, what is less frequently acknowledged, is that those rules produce an assumed model of personhood.
“…A personal budget is a funding and support model that can facilitate implementation of personalised support (Hall 2009). It consists of allocated money to a person based on an assessment of their needs and is intended to empower them (Christensen 2009;Horsell 2020). Their empowerment should happen by enabling choice and control about how to spend the money and deliver the support in personalised ways (Carey et al 2018;Lutz 2020).…”
Support organised through a personal budget aims to promote people's choices in how they arrange their support. Participation in choices of people who use little or no verbal speech to express themselves requires that support workers use personalised communication. This article explores how support workers use personalised communication to prioritise the choices of people with intellectual disabilities about organising support through a personal budget. It applies Gormley and Fager's framework of dimensions for personalising communication to analyse ethnographic data from four people with intellectual disabilities using personal budgets and their support workers. The analysis found that workers promoted people's participation in choices about their support when they focused on how people preferred to express themselves. Support practice, policy and research that target people's communication preferences in making support arrangements can have direct impact on their satisfaction with the arrangements and the quality of their personalised support.
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