Health outcomes and experiences for people living with disability

Our review

The Health Performance Council has been commissioned by Minister for Health and Wellbeing, Hon. Stephen Wade MLC, to undertake a review of matters pertaining to health outcomes for people with disability and of their experiences with the health system. This is a significant project which involves a number of strands gathering and analyse insights from a variety of sources of data, but, most importantly, from people’s lived experiences. We are working to report comprehensively and provide advice to the Minister – which we will openly publish on this web page – that can result in positive change for people in the State living with disabilities and for their families, friends and carers.

In accordance with the commission from the Minister, this review aims to inquire into:

  • the health status of South Australians with disability including quality of life outcomes and life expectancy
  • the experience and outcomes of mainstream health services and specialist disability health services in meeting the needs of people with disability
  • the interaction of health services and disability services, in particular the National Disability Insurance Scheme and its scoping of health services to medically stable people with disability.

Two members of the Health Performance Council with expertise in the field are leading the project: Ellen Fraser-Barbour, a disability sector professional and advocacy expert who has lived experience of disability; and Professor Jennene Greenhill, a senior academic and leader with interests including clinical and rural education.

The design and delivery of the project is being assisted by an advisory group made up of a mix of stakeholder interests, including consumer representatives, health providers and commissioners, and disability sector agencies.


Stakeholder consultation

Download our report on what we heard from our stakeholder consultation in March-April 2020 (PDF, 1.2MB).
Also available as an easy-read edition (PDF, 6.6MB)

This report aims to summarise and report on the key issues that came up in the responses to our consultation and to provide an opportunity for stakeholders to reflect on whether we have properly identified the issues and what should be the priorities for action. It is just one component of what will be the final set of review outputs and will, along with analysis of other source material and data, help guide subsequent analysis for the project's final report and the advice to the Minister that it will contain.

A roundup of the information in the report was presented to the Women’s and Children’s Health Network Nursing & Midwifery Professional Forum in August 2020. View the presentation here or on Youtube:

Stakeholder forum

We ran a stakeholder forum in late November 2020 to develop our understanding further, sharing findings from our consultation, seeking feedback and validation with the community, and considering the implications of emerging findings for generating policy advice to the Minister.

Read our forum output report (PDF, 1.2 MB) 

Review roadmap

There are currently four separate strands of work which have been or are expected to be completed for incorporation into the final review. Stitched through the design and delivery of all of these work streams, with the guidance of our project advisory group, has been to engage widely and frequently with all interested parties.

Strand 1. Audit question setting and broad outline of key issues to be pursued [completed]

With an expert facilitator from The Australian Centre for Social Innovation, our advisory group held a workshop was held on 28 August 2019 to establish a broad outline of key issues to be pursued and the list of audit questions. Download the workshop output report (PDF, 6.6MB).

Strand 2. Record level data analysis [in progress but affected by limited data availability]

We have requested record-level administrative statistical collections from the Department of Health & Wellbeing, Department for Human Services and Attorney-General’s Department. Data will be pseudonymously linked at record level through under arrangements being brokered for us by SA-NT Datalink (part of the Australian wide Population Health Research Network) under the protections of the Public Sector (Data Sharing) Act 2016. What we learn from the primary data collection from stakeholders will help guide our analysis of the data.

Strand 3. Primary data collection from stakeholders [in progress]

We have been undertaking primary data collection from stakeholders, most especially from those with lived experience of disability, about experiences in engaging with the health system and views on what should change if the system were to improve. Subject to advice from others and grant of ethical oversight where applicable, this work stream is also expected to include liaison with key Aboriginal community contacts for in-depth story gathering targeted input and advice from stakeholders representing specific population groups including culturally and linguistically diverse communities.

Download our report on what we heard from our stakeholder consultation in March-April 2020 (PDF, 1.2MB).

Strand 4. Analysis and final report [in progress]

We will produce a final analysis and report with advice to the Minister for input into policy proposals.