scholarly journals 1490Activist and Epidemiologist: Collision or Synergy?

2021 ◽  
Vol 50 (Supplement_1) ◽  
Author(s):  
Anne Kavanagh
Keyword(s):  
Lived Experience ◽  
Expert Witness ◽  
Disability Insurance ◽  
Government Policies ◽  
Royal Commission ◽  
Disabled People ◽  
Insurance Scheme ◽  
Epidemiological Research ◽  
Disability Support ◽  
Knowledge Claims

Abstract Focus of Presentation In this presentation, I discuss how activism and lived experience can enhance epidemiological research. I argue that my lived experience of disability and activism, enhance my research because I: have understanding of the contexts in which disabled people live, I focus on what is relevant to disabled people, and have the impetus to interrogate government knowledge claims. I illustrate this through two research/activism scenarios: COVID-19 pandemic proposed reforms to Australia’s National Disability Insurance Scheme (NDIS) – which provides individual budgets for nearly 500,000 Australians with disability. Findings During the COVID-19, I spearheaded ‘calls to action’ for governments to respond to the specific risks faced by people with disability. I led a research demonstrating the risks to disability support workers. My expert witness testimonies at the Disability Royal Commission were central to the Commission’s recommendations. And my work changed government policies relating to managing outbreaks in disability settings and vaccination. In relation to the NDIS, I have critiqued the research government conducts, and the data they use, to support their arguments for reform. Conclusions/Implications Being an activist with lived experience requires reflexivity to ensure individual biases are not reinforced, but it also offers opportunities. Research is contextualised and the pathway to change more easily charted. Epidemiology should foster the careers of researchers with lived experience who maybe activists as well. Key messages Lived experience researchers and activists can enhance epidemiological research bringing unique insights and new opportunities for change.

Social insurance for individualised disability support: implementing the Australian National Disability Insurance Scheme (NDIS)

2016 ◽  
Author(s):  
Christiane Purcal ◽  
Karen R. Fisher ◽  
Ariella Meltzer
Keyword(s):  
Social Service ◽  
Social Insurance ◽  
Disability Insurance ◽  
Insurance Scheme ◽  
Action Research Project ◽  
New Approach ◽  
The Public ◽  
Service Support ◽  
Disability Support ◽  
Insurance Model

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.

scholarly journals The Shifting Risk of Homelessness among Persons with a Disability: Insights from a National Policy Intervention

2020 ◽  
Vol 17 (18) ◽  
pp. 6512
Author(s):  
Andrew Beer ◽  
Lyrian Daniel ◽  
Emma Baker ◽  
Laurence Lester
Keyword(s):  
National Policy ◽  
Disability Insurance ◽  
Disabled Persons ◽  
Policy Intervention ◽  
Disabled People ◽  
Insurance Scheme ◽  
Moderate Risk ◽  
Policy Interventions ◽  
Nationally Representative ◽  
Household Panel Data

Persons with a disability are at a far higher risk of homelessness than those without. The economic, social and health challenges faced by disabled people are addressed, in Australia, by the recently implemented National Disability Insurance Scheme (NDIS). Using nationally representative, longitudinal household panel data, we construct the Index of Relative Homelessness Risk (IRHR) to track how the risk of homelessness for disabled persons has changed since the introduction of the NDIS. We find that, overall, fewer persons with a disability face moderate risk of homelessness but that many more face high risk. We conclude that the NDIS has not effectively protected disabled people from the risk of homelessness. We reflect on the implications of these findings for policy interventions.

scholarly journals Supporting Choice and Control—An Analysis of the Approach Taken to Legal Capacity in Australia’s National Disability Insurance Scheme

Laws ◽  
2019 ◽  
Vol 8 (2) ◽  
pp. 8 ◽  
Author(s):  
Emily Cukalevski
Keyword(s):  
Support Services ◽  
Disability Insurance ◽  
Legal Capacity ◽  
Insurance Scheme ◽  
Major Step ◽  
Persons With Disabilities ◽  
Disability Support Services ◽  
Disability Support ◽  
Political Right ◽  
And Control

In mid-2013, the Australian federal government introduced the National Disability Insurance Scheme (NDIS), a ground-breaking reform of disability support services, encapsulated by the mantra of increasing “choice and control”. The scheme provides eligible persons with disabilities a legislated entitlement to supports they may require to increase their independence and social and economic participation. The NDIS has been hailed as a major step forward in Australia’s efforts to realize the human rights of persons with disabilities, in accordance with the UN Convention on the Rights of Persons with Disabilities (CRPD). A core aspect of the CRPD is guaranteeing persons with disabilities their civil and political right to equality before the law, including their right to enjoy legal capacity on an equal basis with others, as provided by Article 12 of the CRPD. The purpose of this paper is to examine how the concept of choice and control has been operationalized within the NDIS and to critically analyze the extent to which it accords with the requirements of Article 12. It will be argued that even though the NDIS expressly seeks to implement the CRPD as one of its key objectives, it ultimately falls short in fully embracing the obligations of Article 12 and the notions of autonomy and personhood underlying it.

Correction: ‘National Disability Insurance Scheme and the Lived Experience of Psychosocial Disability for People Presenting to the Emergency Department: Protocol for a Mixed Methods Study’. (Preprint)

2021 ◽  
Author(s):  
Heather McIntyre ◽  
Mark Loughhead ◽  
Laura Hayes ◽  
Nicholas Gerard Procter
Keyword(s):  
Emergency Department ◽  
Mixed Methods ◽  
Lived Experience ◽  
Disability Insurance ◽  
Mixed Methods Study ◽  
Insurance Scheme ◽  
Psychosocial Disability

UNSTRUCTURED In ‘National Disability Insurance Scheme and the Lived Experience of Psychosocial Disability for People Presenting to the Emergency Department: Protocol for a Mixed Methods Study’ some errors were noted after publication. One author has requested a revision of the text; although the article was signed off the author’s contribution was not contained in the article.

scholarly journals National Disability Insurance Scheme and the Lived Experience of Psychosocial Disability for People Presenting to the Emergency Department: Protocol for a Mixed Methods Study (Preprint)

2021 ◽  
Author(s):  
Heather McIntyre ◽  
Mark Loughhead ◽  
Laura Hayes ◽  
Nicholas Gerard Procter
Keyword(s):  
Emergency Department ◽  
Focus Group ◽  
Data Collection ◽  
Lived Experience ◽  
Research Team ◽  
Disability Insurance ◽  
Advisory Group ◽  
Insurance Scheme ◽  
Psychosocial Disability ◽  
Current Practices

BACKGROUND Currently, within Australia, 3.6% of all emergency department (ED) presentations are mental health–related. Information about the context of the person presenting to the ED (beyond immediate needs), including their psychosocial disability (PSD) National Disability Insurance Scheme (NDIS) plan, is reported as incomplete and fragmented. There are missed opportunities for early intervention and care continuity that could potentially inform ED practitioners to revise current practices. OBJECTIVE The aims of this study are: (1) to obtain original data from the lived experience voice of those with the PSD NDIS plan and their experience when presenting to an ED, (2) to gather information from NDIS service providers to reveal communication pathways between the ED and NDIS services, and (3) to gain knowledge from ED clinicians around processes for continuity of care with this population group. METHODS This inductive, mixed methods phenomenological study will involve data collection analyzed sequentially, with each stage informing future stages of the research. Interviews will focus on the lived experience voice exploring potential indicators that have led to an ED presentation, alongside an analysis of associated clinical and administrative documentation and communications. Focus groups with NDIS support workers and support coordinators will provide phenomenological data around the experience from their perspective. National quantitative surveys among those with a PSD NDIS plan and emergency services clinicians will provide insight into current practices within community care and ED presentations. The research project design includes a lived experience advisory group who are assisting with the design of the interview and focus group schedules and national surveys, as well as in shaping the interpretation of qualitative information. All transcripts will be subject to thematic analysis to understand individuals’ meaning-making of these complex and particular phenomena. The research team includes a lived experience researcher and a lived experience carer (PhD candidate). RESULTS This study is funded by MIND Australia as a PhD industry scholarship, which commenced in April 2020. A systematic review as a preresearch activity has been completed and is currently under review. The Human Research Ethics Committee of the University of South Australia has approved this project. An advisory group has been selected, and interview, focus group, and survey schedules are currently being codesigned. Recruitment will commence in November 2021. It is envisaged that data collection will be completed by June 2022. CONCLUSIONS Understanding the lived experience of the precare, during care, and postcare stages of ED presentations from the perspective of those with a PSD NDIS plan will inform the research team around current practices and provide information about improvement for pathways of care for this vulnerable group of people, while also informing health policy. INTERNATIONAL REGISTERED REPORT PRR1-10.2196/33268

Sign in / Sign up

Export Citation Format

Share Document