Is there a hidden group of older people with intellectual disability and from whom are they hidden? Lessons from a recent case-finding study

Abstract

Overseas research suggests that a high proportion of older people with intellectual disability may be “hidden” and out of touch with specialist service systems. This paper discusses the results and implications for service planning of a case-finding process which sought to establish the sampling frame for an in-depth study of older people with intellectual disability who had remained at home till mid-life. Through contact with generic aged and specialist disability services in two metropolitan regions of Victoria, 215 people were located, of whom 72% were known to the State's disability service system. All of the older people unknown to the specialist system were using some form of generic aged services and a significant proportion of both groups was living in generic aged supported accommodation. Although they were not registered with specialist services, they were certainly known to the generic system. This suggests that there is a case for much greater collaboration between the two service systems in research, program development and staff training concerning older people with intellectual disability.