Article
Although the Disability Well-being Index is a welcome initiative for people with disabilities, the room for variables in measuring well-being is a complex issue.
The index is a measure of outcomes based on what is important to people with disability in terms of their personal well-being, designed to be a valid and sensitive outcome measure.
The DWI measures well-being across 14 domains, including independence, relationships, community inclusion, safety, dignity, and work
It is believed that it could be used to monitor outcomes, evaluate the comparative performance of programs and providers, provide information to facilitate better choices, and promote the use of those services and supports that offer the best value for money.
Monash’s Centre for Health Economics Researcher, Professor Dennis Petrie, claims this is the first time a wellbeing index has been built from the ground up by and for people with disability.
It captures what really matters to the participants, not just what systems think should matter. This will enable smarter, more compassionate investments in disability services and supports.
Professor Dennis Petrie
This was echoed by co-author of the research, Professor Dennis Petrie, an inequities in health researcher from Monash’s Centre for Health Economics, who said this is the first time a wellbeing index has been built from the ground up by and for people with disabilities.
“It captures what really matters to the participants, not just what systems think should matter. This will enable smarter, more compassionate investments in disability services and supports,” Professor Petrie said.
Given recent changes to the NDIS, a focus on cost-effective services and supports has been a focal point for politicians and media alike.
Well-being is a subjective and personal aspect of a person’s lived experience. What may be positive for one person is negative for another.
Unlike the NDIS, which is meant to support the well-being of people with disability, wellbeing tools are a useful way of measuring how well the services and supports people with disabilities receive are working.
But the effect of the tool on measuring the success of the NDIS has crucial implications.
Professor Gang Chen (Adjunct), a project lead in quality of life and health economics research at Monash’s Centre for Health Economics, said the Index can be used to help measure the impact of the National Disability Insurance Scheme (NDIS) and other agency services in a way that is meaningful for all people with disabilities.
“Looking at the Index results over time and across services for diverse groups of people with disability can inform better planning decisions and assist in prioritising resources.”
Since changes to the NDIS began rolling out, wellbeing has been placed on the back burner for politicians.
Where programs were initially approved in conjunction with physical and emotional benefit, the latter appears to have been significantly minimised.
Serious questions have been raised, if people with disability are at risk of institutionalisation due to low quality of life, will the tool only have indirect benefits (policy development) or will it have an impact on individuals (e.g. increased NDIS funding if low quality of life is identified)?
The danger is that quality of life may become a bartering tool for equity rather than a right that everyone deserves.
It also reinforces the false dichotomy between the quality of life for disabled and non-disabled individuals.
Whilst people with disabilities often have varying needs that require more support than their non-disabled peers, wellbeing is something shared across the spectrum of experiences.
To achieve lasting progressive change, society at large, not just politicians or policy developers, must acknowledge that whilst people with disabilities do indeed have differences requiring support, we are also just like everyone else.