Background The connection between choice, control and health is well established in the literature on the social determinants of health, which includes choice and control of vital health and social services. However, even in the context of universal health and social care schemes, the ability to exercise choice and control can be distributed unequally. This paper uses the case of the Australian National Disability Insurance Scheme (NDIS) to examine these issues. The NDIS is a major policy reform based on an international trend towards personalisation in social care. It aims to increase choice and control over services and supports for people who have or acquire a permanent disability, thereby boosting citizen empowerment and improving health and social outcomes. Methods The research is a structured review of empirical evidence on the administration and outcomes of the NDIS to identify how social factors constrain or enable the ability of individuals to exercise choice within personalised care schemes. Results We show how social determinants of health at the individual level can collide with the complexity of policy delivery systems to entrench health inequalities. Conclusion Many social policy reforms internationally focus on improving empowerment through enabling choice and control. However, if administrative systems do not take account of existing structural inequities, then such schemes are likely to entrench or grow social inequality. Our research indicates that more attention must be given to the design of policy delivery systems for personalisation schemes to ensure health equity.

Related reports and documentsUnderstanding and reimagining social housing pathways https://www.ahuri.edu.au/research/research-in-progress/ahuri-inquiries/understanding-andreimagining-social-housing-pathways AHURI Final Report No. 324 ii AHURI AHURI is a national independent research network with an expert not-for-profit research management company, AHURI Limited, at its centre.AHURI's mission is to deliver high quality research that influences policy development and practice change to improve the housing and urban environments of all Australians.Using high quality, independent evidence and through active, managed engagement, AHURI works to inform the policies and practices of governments and the housing and urban development industries, and stimulate debate in the broader Australian community.AHURI undertakes evidence-based policy development on a range of priority policy topics that are of interest to our audience groups, including housing and labour markets, urban growth and renewal, planning and infrastructure development, housing supply and affordability, homelessness, economic productivity, and social cohesion and wellbeing. AcknowledgementsThis material was produced with funding from the Australian Government and state and territory governments. AHURI Limited gratefully acknowledges the financial and other support it has received from these governments, without which this work would not have been possible. AHURI Limited also gratefully acknowledges the contributions, both financial and in-kind, of its university research partners who have helped make the completion of this material possible. DisclaimerThe opinions in this report reflect the views of the authors and do not necessarily reflect those of AHURI Limited, its Board, its funding organisations or Inquiry panel members. No responsibility is accepted by AHURI Limited, its Board or funders for the accuracy or omission of any statement, opinion, advice or information in this publication. AHURI journalAHURI Final Report journal series is a refereed series presenting the results of original research to a diverse readership of policy-makers, researchers and practitioners. Peer review statementAn objective assessment of reports published in the AHURI journal series by carefully selected experts in the field ensures that material published is of the highest quality. The AHURI journal series employs a double-blind peer review of the full report, where anonymity is strictly observed between authors and referees.

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Everyone has the right to employment. Work is important for health, well‐being, and social, economic, and financial inclusion. However, it is often difficult for people with intellectual disability to find and maintain work, especially in the open labour market. Policy challenges remain about who can access open employment (also sometimes called competitive or supported employment) and how often people with intellectual disability do so. Greater understanding about the barriers that people with intellectual disability encounter when they try to find and keep work in open employment is needed.Drawing on research with 51 people with intellectual disability in Australia, this paper examines the systemic barriers they report to finding and maintaining work in open employment. The findings highlight that the barriers they experience stem from narrow, dismissive, and discouraging attitudes to their work in open employment and from a spectrum of experiences of stigma and discrimination in open workplaces. The paper thus provides new knowledge about reasons that people with intellectual disability may either reject or not continue in open employment and take up less inclusive work options. The paper discusses the implications of the findings, including the need for policy development for attitudinal change, designing more varied roles for employees with intellectual disability, ensuring access to industrial relations protections, and increasing and better regulating and funding requirements on support to people with intellectual disability who are seeking work in open employment.

This article reports on the peer support experiences of mothers with a son or daughter with intellectual disability and challenging behaviour. Engagement in parent peer support programs can improve family quality of life and may have multifaceted benefits at the interpersonal, intra-individual self-change and sociopolitical levels. Thirteen mothers were interviewed about their experiences of participating in a parent peer support program. Thematic analysis focused on the process elements of the program that contributed to its effectiveness in providing support to parents. There were three process-related themes: the role of a paid coordinator, diversity of engagement strategies and matching of peer support partners. Mothers appreciated the opportunities provided to engage in a range of strategies tailored to individual preferences, time and capacity constraints, supported by the paid coordinator. One-to-one peer support proved difficult to sustain given the challenges mothers faced in their day-to-day lives.

Australia is implementing an ambitious new approach to individualised disability support based on a social insurance model. In a world first, the National Disability Insurance Scheme (NDIS) is funded through a levy on income and general taxation and gives Australians with disability an entitlement to social service support. This chapter describes the NDIS approach and implementation so far and summarises concerns and challenges about the NDIS discussed in the literature. It uses data from an action research project to inform feasibility questions about how people find out about and receive the individualised support they need. The chapter highlights a basic gap in people’s familiarity with what individualised support is, how it works and how they might benefit from the new approach. A policy implication is that, with the expansion of individualised support, the public is likely to need various opportunities and forms of information sharing, to explore and learn from each other about what the new approach is and what its possibilities are.

Inquiry into understanding and reimagining social housing pathways https://www.ahuri.edu.au/research/research-in-progress/ahuri-inquiries/understanding-andreimagining-social-housing-pathways AHURI Final Report No. 316ii AHURI AHURI is a national independent research network with an expert not-for-profit research management company, AHURI Limited, at its centre.AHURI's mission is to deliver high quality research that influences policy development and practice change to improve the housing and urban environments of all Australians.Using high quality, independent evidence and through active, managed engagement, AHURI works to inform the policies and practices of governments and the housing and urban development industries, and stimulate debate in the broader Australian community.AHURI undertakes evidence-based policy development on a range of priority policy topics that are of interest to our audience groups, including housing and labour markets, urban growth and renewal, planning and infrastructure development, housing supply and affordability, homelessness, economic productivity, and social cohesion and wellbeing.

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