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Every moment has potential: actively supporting people with intellectual disability

Every moment has potential: actively supporting people with intellectual disability

credit Joshu Fartch

Professor Christine Bigby
Professor Christine Bigby is the Director of the Living with Disability Research Centre at La Trobe University, whose research is meaningfully advancing the quality of life of people with cognitive disabilities.

Continuously supported by a number of ARC grants since 2004, Professor Bigby’s research focus in recent years has been on the culture and theory behind the operation of group homes—which, in Australia, is the dominant form of accommodation for people with severe intellectual disabilities.

“Our research team has been looking at group homes, some good and some bad, looking at key indicators of the quality of service that is being provided,” says Professor Bigby.

“What we have explored is engagement, which is a key indicator of quality—and which translates into improved quality of life for the residents.”

“Our early work found high levels of disengagement—an average of 50 minutes of each hour in one organisation. This means that although they were receiving care, being washed and fed and so on, the residents were actually just sitting there doing nothing for most of the day.”

Professor Bigby says that a person-centred model of support developed in the UK called ‘Active Support’ enables people with intellectual disabilities to participate more fully in their lives. Active Support has been shown to significantly increase the amount of time residents spend engaged in all types of activities in group homes, as well as increasing staff satisfaction.

“Active support is a core element of person-centred approaches,” says Professor Bigby. “But it can be difficult to implement and sustain. Through an ARC Linkage Projects grant, in collaboration with partner disability service organisations, we have investigated how to improve the delivery of Active Support in group homes.”

Through the course of the project, the research team collected a significant dataset of measures related to the delivery of support being given to 461 service users across 71 services in Australia, while the number of participating service organisations increased from 6 to 14.

“We have spent a lot of time with hundreds of people with intellectual disabilities in group homes, recording the frequency of contact and assistance from staff and the overall quality of support they received. We also looked at the quality of the front-line practice leadership that the direct support staff received.”

credit Joshu Fartch
Professor Bigby says that it is a mistake to focus on the few ‘horror stories’ in disability support, which may miss the bigger picture.

“You can’t just ask people with severe intellectual disability about their quality of life, or the support they are receiving, you need to observe it. Staff can be unreliable and overly optimistic and the people themselves may not use language or concepts to communicate. You need to really closely observe what is happening.”

The research team has now collected a solid evidence base of observations, consolidated in a dataset that covers multiple years, multiple services, and multiple service users. With this dataset they have been able to identify specific organisational structures and cultures which are effective at delivering Active Support, and have developed of an explanatory model of the predictors of good Active Support.

“Organisations in our study have used this evidence and organisational-specific data to support change in the way they do things,” says Professor Bigby. “We have also developed training materials, in collaboration with one of our partner organisations, Greystanes Disability Services, about embedding Active Support—called ‘Every moment has potential’. These materials are available online and are being widely used by the sector.”

Professor Bigby’s research group now has a national and international reputation for their research into many aspects of increasing social inclusion of adults with intellectual disability.

“In the future we will see people with disability being more and more socially included in community life, and exercising choice and control over their own lives. Around the world, governments are looking at how we adjust disability support to account for this. By assembling the big data and showing what works, we are providing the evidence base for policy makers to develop their disability policy visions,” says Professor Bigby.

“In Australia, the National Disability Insurance Scheme (NDIS) is the major policy reform underway, and we aim for our research to influence the funding, design and monitoring of services under this new scheme.”

“In the end, we hope this will allow people with intellectual disabilities to have lives which are as rich and individual as anyone else’s.”

credit Joshu Fartch
credit Joshu Fartch
credit Joshu Fartch

Image of Professor Bigby credit: La Trobe University. All other images credit: Joshu Fartch.

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