Prof. Christine Bigby1, Prof Jacinta Douglas1
1La Trobe University, Living With Disability Research Centre, Bundoora, Australia
This paper details the development of the LaTrobe Support for Decision Making Practice Framework that can be applied by informal or paid supporters of people with intellectual disabilities or ABI. These two groups share in common stable rather than declining cognitive impairment characterized by difficulties with executive function, self-direction and communication of varying severity.
The framework was derived from a research program modelled on the Medical Research Council four-phase approach to development and evaluation of complex interventions. In phase one we systematically reviewed the literature; and qualitatively explored the experiences of support for decision-making from the perspectives
of people with cognitive disabilities and their supporters in several grounded theory studies that included 32 adults with cognitive disabilities and 75 supporters. Phase two (feasibility and piloting) results supported phases three (evaluation) and four (implementation) which are currently underway.
The framework outlines the steps, principles and strategies involved in support for decision-making. It focuses on understanding the will and preferences of people with intellectual disabilities and guides those who provide support including families, support workers, guardians and health professionals.
This framework applies across diverse contemporary contexts and is the first evidence-based guide to support for decision-making.
Professor Christine Bigby is Director of the Living with Disability Research Centre at La Trobe University. She has won the ASID Research prize three times since 1993. She has published 6 book, 35 book chapters, over 135 journal articles and numerous research reports. She is editor of the Journal of Policy and Practice in Intellectual and Developmental Disabilities.