Experiences of Australian adults living in NDIS supported accommodation during the COVID-19 pandemic

My name is Dr Darryl Sellwood. I’m a scholar with lived experience of disability, working at Flinders University in Adelaide, South Australia. I require assistance with many activities of daily living which is funded through the NDIS. Yet during the depth of the pandemic, using disability service providers was a struggle and sometimes scary. There were difficulties finding support workers to fill rosters. There were issues around access to vaccinations and supplies of appropriate PPE (if support workers were willing to have or use them). There were concerns about the potential for transmission of disease due to the distributed nature of the workforce – many support workers travel between multiple locations and provide services to numerous clients. There was deep anxiety about the possibility of ending up in hospital as our health system was already operating beyond capacity and many hospital staff are not trained in supporting people with complex needs relating to their disabilities.

I experienced various types of responses from my service providers. Some providers were good and others less helpful, often leaving a bad taste in my mouth, which raised questions for me concerning the experiences of others who were in similar situations to me.

I started looking at the literature. Even before the COVID-19 pandemic, adults with disabilities were more likely to experience health difficulties and restrictions in community participation as compared to the general population. There was emerging evidence that rapid changes in support service provision and public health measures designed to limit the impact of the COVID-19 pandemic had the effect of compounding these inequities in a number of countries around the globe, such as the UK and USA. In particular, I was impressed with the work done in the UK by Shakespeare et al which was reported in a journal article Disabled people in Britain and the impact of the COVID‐19 pandemic. I found that many of the issues I had experienced were being discussed in the literature. However, while some disability-related COVID-19 research had been conducted in Australia, I couldn’t find anything focusing on the experiences of people living independently, either in group settings or in their own homes, with support from the NDIS.

This led me to joining Professor Arciuli’s team at Flinders University to explore the experiences of people with disability during the COVID-19 pandemic who received NDIS support in their homes. We reached out to Sir Tom Shakespeare of the London School of Hygiene and Tropical Medicine and he agreed to join the team.

We are hoping that by actively listening to the experiences of people with disabilities, our findings will guide the development of policies and procedures designed to improve the safety and experience of Australians living independently with support from the NDIS during future state or national health crises.

THE RESEARCH TEAM

I completed my PhD in 2019 at Flinders University.  My PhD research project investigated the experiences of people with Complex Communication Needs in getting into and keeping romantic or sexual relationships. I have complex communication needs (CCN) and use a variety of Augmentative and Alternative Communication (AAC) tools and techniques to communicate. I use an electric wheelchair for my mobility. As a computer science graduate with experience in the telecommunications field, I have a broad perspective on both user and technical issues, including understanding how systems work and fail. I graduated with first class Honours in a Bachelor of Art degree researching telecommunications access for people who rely on AAC.

The other members of the research team are Professor Joanne Arciuli of Flinders University, Dr Benjamin Bailey who was in Arciuli’s team at Flinders University when the project began and is now at the University of Newcastle, and Sir Tom Shakespeare of the London School of Hygiene and Tropical Medicine. Each have multiple years of experience researching within the disability field.

Professor Joanne Arciuli is Dean (Research) in the College of Nursing and Health Sciences at Flinders University and theme lead for methodological innovations in the Caring Futures Institute. In one of her many roles, Professor Arciuli leads a program of research focussed on child development and disability in the areas of speech, language, literacy, learning and cognition, school satisfaction, inclusive education, and broader aspects of wellbeing. Her research program has been continuously funded by the Australian Research Council since 2007, including a prestigious 4-year Future Fellowship (2014–2018).

Dr Benjamin Bailey is a certified practicing Speech Pathologist and researcher interested in child development and developmental disability. His research focuses on supporting children’s communication development, including oral language, reading and writing, and community participation through innovative, co-designed interdisciplinary practice.

Sir Tom Shakespeare is at the London School of Hygiene and Tropical Medicine. He trained in social and political sciences at Cambridge University, and subsequently studied for an MPhil and PhD.  He has taught and researched at the Universities of Sunderland, Leeds, Newcastle and East Anglia. His books include: the Sexual Politics of Disability (1996); Disability Rights and Wrongs (2006; 2014); Disability - the Basics (2017).  He was a member of Arts Council, England (2003-2008) and Nuffield Council on Bioethics (2013-2019).  Currently, he is chair of Light for the World - UK and vice-chair of Light for the World International.

ABOUT THE SURVEY

We are specifically recruiting Australian adults with disabilities who live in NDIS supported accommodation during the COVID-19 pandemic (Flinders University Project #5482). This includes people who live in group settings and those who live in their own homes. We are offering additional supports for people wishing to participate in the survey (i.e., assisting participants to complete surveys via telephone rather than online) and are offering participants the chance to enter a draw for one of three $100 gift cards in acknowledgement of their contribution to our research.

The survey is mostly multiple choice questions with a few open-ended questions, which explores the participant’s experiences of their formal and informal supports before, during and after the COVID-19 lockdowns in Australia. The survey can take between 20 to 60 minutes and participants can have people assist them to complete the survey.

If you know of anyone eligible who may be interested in participating in the research, please invite them to consider the survey https://bit.ly/3B7Wah1. If you have any questions or would like further information about the project, please contact Dr Darryl Sellwood at Darryl.sellwood@flinders.edu.au or Dr Bailey at ben.bailey@flinders.edu.au