Disability and older people: issues and challenges

Stream: Disability
Date: Tuesday, 10 September 2019
Time: 1.35 pm – 3.15 pm

Abstract

Disability rights advocates such as Bank-Mikkelsen, Nirje and Wolfensberger began the normalisation movement in the late-1960s, which saw the gradual movement of people with intellectual disabilities (PwID) out of large congregate facilities. The UN Convention on the Rights of Persons with a Disability (UNCRPD) supports the principle that PwID should have the same patterns of life opportunities as the general population. Australian aged-care and disability service reforms and the advent of NDIS have changed the policy and funding landscape from service-centric to individualised-funding. However, there are gaps in policy and practices concerning older PwID. Using Bronfenbrenner’s ecological systems framework, the study aimed to assess disparities in social, health, and quality-of-life (QoL) indicators between older PwID and non-ID groups; and define a more viable interface between disability and aged-care sectors to enable integrated community-based living.

Study methods included a structured-survey of older-PwID (n=391) and non-ID people (n=920); and key informant (KI) interviews (n=36) with policy-makers and senior managers in disability and aged-care sectors.

Results showed greater social disparities and poorer health in older PwID. Their aggregate QoL score was higher indicating some acquiescence and/or low-expectation bias. KI interviews highlighted barriers between disability and aged-care sectors. Inter-sectoral silos thwarted coordinated whole-of-person operationalisation of policies.

Ageing-related needs of PwID must be considered when reforming generic ageing policies and practices. Applying a lifelong perspective would better lead to a seamless transition throughout one’s life stages. Practice and policy must focus around co-design, autonomy and decision making - at the personal, organisational, policy and societal-levels.

Authors

Trevor Parmenter (Presenter), University of Sydney
From 1997 until retirement in 2009, Professor-Emeritus Trevor R. Parmenter held the Foundation-Chair of Developmental Disability Studies at Sydney Medical School, University of Sydney. He is Honorary Professor in the Faculties of Education and Social Work and Health-Sciences, Sydney University; and Adjunct-Professor, School of Rural Medicine, University of New England. He held conjoint position of Director, Centre for Disability Studies, Royal Rehabilitation Centre Sydney. Former positions include Professorial Fellow and Director of the Unit for Community Integration Studies at Macquarie University; prior to which he held teaching and administrative positions in the New South Wales Department of Education and Training.

Marie Knox, University of Sydney
Dr Knox is an adjunct Associate Professor with the University of New England, Australia. Her research interests centre round the intersection of ageing and disability studies, with particular interest on highlighting the lived experience of people with lifelong intellectual disability, and has been a Chief Investigator on highly competitive Australian Research Council grants focussing on this area. Prior to her retirement at the end of 2017, she held a range of academic positions, including senior research fellow with the Centre for Disability Studies, University of Sydney and Senior Lecturer at Queensland University of Technology and Macquarie University.

Rafat Hussain (Presenter), Australian National University
A/Professor Rafat Hussain is a public health physician with joint affiliation with the Medical School and the Research School of Population Health at the Australian National University. Her research interests include: ageing; health & well-being; disabilities, care-giving; rural health; and health services. She is a recipient of several research grants; and has published extensively with over 4,500 citations for her research papers. She is an Associate Investigator for the ARC-funded Centre for Excellence in Population Ageing Research (CEPAR). Rafat is Adjunct Professor, School of Rural Medicine, University of New England (UNE); and previously was Professor of Public Health at UNE.

Stuart Wark, University of New England
Stuart Wark is the Year 2 Clinical Academic Coordinator in the School of Rural Medicine at the University of New England. He has a two decade working history in the community and public health sectors, and retains strong relationships with both rural and metropolitan Non-Government Organisations (NGOs). Stuart has sat on state and national advisory committees, and has been both chair and secretary of a Clinical Practice Forum for rural health practitioners. He currently teaches across the first three years of the Joint Medical Program and supervises PhD students in the fields of intellectual disability, ageing and/or public health.

Matthew Janicki, University of Illinois, Chicago
Matthew P. Janicki, is the co-chair of the US National Task Group on Intellectual Disabilities and Dementia Practices; and research A/Professor, Department of Disability and Human Development, University of Illinois at Chicago. Formerly, he was director for aging and special populations for the New York State Office for People with Developmental Disabilities. Currently, he leads a study of specialized group-homes designed for dementia-related-care of adults with intellectual-disability. He was project director of an initiative to provide reports to WHO on promoting longevity among adults with ID. He has authored numerous books and articles on aging, dementia, public policy, and rehabilitation.