Family life and the impact of previous and present residential and day care support for children with major cognitive and behavioural challenges: a dilemma for services and policy

Abstract

Since the development of inclusion and integration, parents have increasingly become the major, and sometimes the only, carers of their children with disabilities. Many families speak of stress and frustration with service and community support, and some have turned to residential and specialised day care services to overcome challenges. The need for, and experiences of, such services needs to be examined not just in terms of the child but also in terms of family impact. The study involved interviewing parents on a 1:1 basis and in a focus group to examine the perceptions of family life, along with their later experience of full-time day and residential care. The children had multiple diagnoses of intellectual disability plus major challenging behaviour. The results describe the major challenges facing families when the children spent most or all of their time at home. This contrasted starkly with the changes in perceived family life once the children were in residential care and day support. Improvements in behaviour of the children were noted and children began to return home for periods of time. Parent noted increased stability of family life, involvement of siblings in more normal community life and increased opportunities for spouses to function more effectively in one or more life domains. Family members perceived a major improvement in overall quality of life. The results are consistent with findings in other family quality of life studies in terms of family experience, and the types of challenges faced when the child was at home, including when excluded from the regular education system. Extensive support in raising children is required by parents and without this there is a deleterious effect on family life. Many families experienced exclusion within their home communities. Full-time day and residential support were provided, allowing the family to function more effectively and later to provide a more natural home environment for the child. The article raises questions of policy concerning family well-being, as well as the needs of the child.