Life course of Finnish persons with intellectual disabilities born 1898-1960 : a 35-year follow-up study

Abstract

There are scanty data on the life course of people with intellectual disability (ID) based on a long-term follow up of an adequately big number of patients. In Finland, a nationwide representative sample of persons born in 1898-1960, so called Finland-in-Miniature sample, with suspected or known ID was studied in 1962 by physicians, psychologists and social scientists in order to determine the prevalence of ID and the corresponding need for care, training, health and social welfare services (Amnell 1966, Ruoppila 1966, Tarvainen 1966). At baseline, altogether 3 748 persons were examined, resulting 2 372 people being diagnosed as intellectually disabled. Two different subsamples of the baseline study were followed up 9 years later. These included two cohorts of people born in 1932 to 1946 and 1950 to 1954 and aged 7 to 13 (first school years) and 16 to 30 years (beginning the possible work career) at the baseline assessment. The aims of the new follow up study in 1998 were to examine the predictive validity of the original ID diagnoses, the life course of people with ID and studied but not diagnosed as ID in 1962, especially the use of different general services including hospital care, institutional care, out-patient care and housing services. Furthermore, our aim was to find out the age-related changes in physical, psychological and social functioning or general health condition of highly aged persons with ID. Ethically it is important to emphasise that the persons with ID, if possible, themselves answered in the interviews thus reflecting their own feelings. The drop out in different phases of the study has been very small. Thus the present study has many special strengths. We could use a nationwide representative large sample making possible analyses of age/cohort and gender difference as well as differences in the degree of ID. In this volume we have covered very broadly the life course of people with ID including their physical, psychological and social functioning or other words their health condition as a whole. The present volume ”Life Course and Intellectual Disability” includes 35 years´ follow up of a nationwide representative sample of originally 2372 subjects with ID. There are two main reasons which indicate the publication of these data. Firstly, the methodology part is complicated and originally reported in Finnish (Ruoppila 1966) and when forthcoming publications need to quote the methodology, it is easier for the readers to find out the essential reference. Secondly, the parts of this volume including methodology, predictive validity of diagnoses and use of services as a whole make a unity giving central information of the life course of people with ID. We believe that the present volume has worldwide implications and illustrates the relevant updated points on the life course of people with ID and thus helps the rational development of services for these people.