Supporting People Ageing with an Intellectual Disability: The Rural Perspective

Abstract

In recent years, a combination of factors has seen life expectancies for people with intellectual disabilities increase dramatically. While this improvement is naturally a very desirable outcome, it is resulting in a new crisis: How are a substantial number of people with an intellectual disability going to be supported as they start experiencing age-related issues? The majority of research so far has focussed upon the individual, but little information is available regarding how the frontline direct care staff are coping with this relatively new phenomenon. This study explores the understanding and perceptions of disability support workers in rural and remote areas of New South Wales (NSW) with respect to the most pressing issues facing them as they support people with an intellectual disability who are ageing. A three-round Delphi research model was utilised over a period of twelve months to examine the views of disability support workers from selected rural NSW organisations regarding issues associated with ageing. The participant group (N=31) included representatives from fourteen different disability agencies covering nine of the ten Department of Ageing, Disability and Home Care designated non-metropolitan regions. This study detailed and examined a large number of items rated as important by direct care staff in relation to the ageing of people with intellectual disabilities. A thematic analysis of these issues identified specific areas of concern including funding, inadequate or inappropriate training, access to relevant generic and specialist services, medical and health problems, time constraints and paperwork demands, and family dynamics. On the basis of the research, eleven recommendations were made. The findings of this study have implications for government departments, disability service providers and training entities in both the delivery of services to individuals with intellectual disabilities who are ageing, and for the training of the staff who support this cohort of people. It is believed that the results have the potential to assist in the development of appropriate pathways and options to facilitate direct care staff to work successfully with people with intellectual disabilities who are ageing.