Moving home: the experiences of women with severe intellectual disabilities in transition from a locked ward

Abstract

Accessible summary • Eleven women with intellectual learning disabilities who had lived empty lives shut away in a locked ward of an old intellectual disability hospital were moved out when the ward was closed down. • This study found that moving home was very hard for the women. This was mainly because they were not told what was going to happen, and they were not given any choice about where they would move to or who they would live with. • When they got to their new homes the people who were looking after them had not been told much about them, or about their lives, or what they liked and didn't like. • Eight of the women moved to a new home in the hospital grounds. It was better than the old ward in some ways but their lives didn't change very much. There were still lots of rules, and they still didn't have much to do, or have the chance to make new friends. • Three women moved to houses out in the community. Their lives did get better to some extent. One woman, especially, was able to live a much fuller life, making her own choices in her daily life, and making new friends. Summary Previous research into deinstitutionalization has largely ignored the perspective of people with intellectual disabilities, especially those with severe intellectual disabilities. This research aimed first to understand how women with severe intellectual disabilities experienced transition from a locked ward of an old long-stay hospital into other homes, and second, to determine the extent to which their lives changed in their new homes. Ethnographic methods were used, including participant observation, interviews and document analysis, in order to get to know the eleven participants and the nature of their daily lives. The study found that the experience of the move was largely negative for all the women: they were not involved in the process of their move, little information was transferred to their new homes and they were insufficiently supported. The study also found that for the majority of the women little changed in their lives in their new homes, although this depended on where they moved to. Those who moved to a campus home continued to lead lives restricted by rigid routines, strict rules, few daily activities, and few opportunities for relationships beyond the staff team. Those who moved to homes in the community had more opportunities to make choices, learn new skills and explore new activities. The study found that, in general, the women continued not to be acknowledged as unique individuals, who have pasts, close relationships, clear preferences, abilities and rich emotional lives. The study highlights the needs of women with severe intellectual disabilities in their move out of long-stay hospitals, and in the planning of their futures.