Ageing and Lifelong Intellectual Disability: Implications for Policy (1998)

This paper reviews gaps between services and needs and describes the parameters of public policy changes required if community agencies and families are to meet the needs of older adults with lifelong intellectual disabilities. A national research project undertaken between 1989 and 1991 provided data on both national and regional demographic, health status and service statistics and was innovative in disseminating this information widely and to a variety of audiences, including through a professional photographic installation. In spite of this effort and the stated intention to provide evidence for action, neither policy nor practice have grown to meet the needs identified. Public policy must value the voices of people with intellectual disabilities and their carers or advocates and actively support partnerships between government sector and community organisations if the needs of communities and families are to be met. A national research project about older people with lifelong intellectual was undertaken between 1989 and 1991 to determine the size of the population, to assess present health and abilities and to provide reliable information that could be used for providing services and developing public policies (Hand, 1994). It was hoped that the findings of the research would lead to greater interest in the field by clinicians and researchers and to better understanding by the public of the lives of people with intellectual handicap (Hand, 1996 p. 108). This major project and pilot studies 1986-1988, was followed by focussed investigations of specific issues, most recently a study of the future planning efforts of families. A current project includes medical examination, information about life expectancy and an update of health and service needs of the original study population. In 1990 New Zealand had a population of 3.4 million of whom 745 548 were aged 50 or older. The original research identified 1,063 people with lifelong intellectual disabilities living in New Zealand in 1990 aged 50 and older, corresponding to a prevalence of 1.43 per 1000 (Hand, 1994). This was a study of people who had been regarded as mentally retarded since childhood and in 1990 were aged between 50 and 88. Half were aged between 50 and 60 years. There were equal numbers of men and women, and four percent were Maori (Hand, 1994). Many different and innovative ways of collecting, analysing and disseminating data were undertaken (Hand, 1996; Reid & Hand, 1995). Data produced included national demographic, health status and service statistics, transcripts and audio-tapes of personal interviews with research subjects and some family members, photographs and a number of texts. Products of the investigation were papers in academic journals, reports to health service purchasers, oral presentations to professional conferences, special interest groups, parents and service providers, talks and debates open to the general public and public information sheets. An exhibition of photographs and text was produced in cooperation with a professional photographer (Hand, Reid, & Noble, 1992). A quality photographic installation was created independently by the photographer for display in art galleries and museums (Noble, 1994) and has toured New Zealand for three years. In spite of these efforts and the research teams' stated intention to provide evidence for action neither policy nor practice have grown to meet the needs identified. The purpose of this paper is to reconsider the gaps between services and needs, to describe the parameters of the policy changes that we think are needed and to suggest strategies for more effective influence over policy formation. The Shift to Community One of the reasons for our original study (Hand & Reid, 1989) was a response to the worries of organisations, like the Society for the Intellectually Handicapped One) (now known as IHC), Presbyterian Support and the Salvation Army about the growing numbers of people with lifelong intellectual disabilities who unexpectedly and urgently needed a home. …