Ariella Meltzer, Helen Dickinson, Eleanor Malbon and Gemma Carey
This blog post is part of a series linked to the Evidence & Policy Special Issue (Volume 17, Issue 2): The many faces of disability in evidence for policy and practice. Guest Edited by Carol Rivas, Ikuko Tomomatsu and David Gough. This post is based on the Special Issue article, ‘Why is lived experience important for market stewardship? A proposed framework for why and how lived experience should be included in stewarding disability markets‘.
Many countries are moving towards market-based provision of human services, with ‘quasi-markets’ in place. Quasi-markets are different to the conventional markets we are used to within our daily lives, as they require governments to play a role in helping to steer them to success. This is known as ‘market stewardship’. In our Evidence & Policy article, we explore the types of evidence that government uses to make decisions about how quasi-markets should run.
Our case study
We considered this question of evidence use and decision-making in a quasi-market currently operating for people with disability within Australia’s National Disability Insurance Scheme (NDIS). The NDIS is an individualised funding scheme for people with disability, where they purchase supports from a government-run marketplace using their personal budget. The Scheme was designed to increase the choice and control of people with disability over their services.
The government has a key role in stewarding solutions to perceived problems in the NDIS market, such as by introducing new providers into the market in areas where they judge there may not be enough to meet demand. So far, it makes these decisions using economic models and actuarial calculations based on information about inputs and outputs. What is missing are decisions based on a real evaluation of outcomes for the people with disability who are using the Scheme – for example, whether people with disability are using a particular service (such as personal care) because they have no choice or because it is high quality and meets their needs. Given the Scheme is designed to increase the choice and control of people with disability, this seems a critical oversight.
Stewarding through different evidence
To consider how to use experiential evidence to inform the NDIS quasi-market, we looked towards a long history of how lived experience has been used in other policy processes and decisions. In policy, co-design and co-production have been common ways of drawing on the authentic perspectives of people using services. More broadly in the disability community, inclusive, participatory and action research approaches have been used to make sure people with disability are guiding the knowledge and decisions that affect them.
Based on precedents from these areas, we identified three principles that can be used to better incorporate lived experience information from people with disability. Incorporating these principles into future structures for market stewardship is critical to the ongoing running of the NDIS and to ensuring it delivers quality for people with disability.
1. Invite meaningful and flexible participation from people with disability
Provide options for how people with disability can contribute, including co-design-style roles for people with disability on a team of market stewards, or providing a way for policymakers to draw on the lived experience of people with disability as part of an evidence-informed process.
2. Make market stewardship information accessible to people with disability
Produce relevant information about the market in accessible formats (e.g. sign language, large print, Braille, Easy Read) and allow communication/accessibility supporters to assist people with disability who are in co-design-style roles. Understand that people with disability are unlikely to want to talk about their lives in economic terms (‘the language of the market’).
3. Amplify the voices of people with disability
Put structures in place to amplify the voices of people with disability, using their perspectives as evidence and not that of people who have historically talked over them. Such structures can include appointments to policymaking and/or co-design-style roles based on lived experience, training in leadership and policy for people with disability, and appropriate accessibility supports. With these principles in place, we argue that the NDIS quasi-market can better reflect the nuances of the lives of people with disability, beyond what the usual input and output information can show. With mechanisms for including lived experience as a form of evidence for market stewardship decision-making, we suggest that there will ultimately be better capacity to truly meet and foster choice and control for people with disability.
Dr Ariella Meltzer is a Research Fellow at the Centre for Social Impact, UNSW. Ariella specialises in complex qualitative research. Her research is based in disability studies, youth studies and social policy, and centres on the themes of relationships and social change.
Helen Dickinson is Professor of Public Service Research and Director of the Public Research Group at the University of New South Wales, Canberra. Much of her research involves investigating ways to design and deliver more effective public services and she has a particular interest in engaging service users in these processes.
Eleanor Malbon is a Research Fellow at the Centre for Social Impact, UNSW, where she is part of an interdisciplinary team of researchers committed to addressing inequality. She is an expert in systems-based research methods and uses these along with community contributions to help find solutions to complex problems.
Professor Gemma Carey is the Academic Director of the Centre for Social Impact UNSW. Gemma undertakes primary research in governance and policy implementation. Drawing on this work, she also contributes to emerging debates in public health regarding the social determinants of health.
You can read the original research in Evidence & Policy:
Meltzer, A. Dickinson, H. Malbon, E. and Carey, G. (2021). Why is lived experience important for market stewardship? A proposed framework for why and how lived experience should be included in stewarding disability markets. Evidence & Policy, DOI: 10.1332/174426421X16142714946996.
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