The white paper entitled ‘Better services for the mentally handicapped’ (DHSS, 1971) stated as a general principle that: ‘Each handicapped person should live with his own family as long as this does not impose an undue burden on them or him, and he and his family should receive full advice and support.’ Sixteen years later, the advice and support that families require has not yet been satisfactorily clarified. In ‘Mental handicap: progress, problems and priorities’ (DHSS, 1980) it was concluded that further work was required on ‘the roles of the various professionals who provide services to families of mentally handicapped children’, on ‘service policy’ and on ‘how services to families can best be co-ordinated’.
Although such desires are commonly expressed, there is insufficient information available about what the needs of families of children with learning difficulties are. Indeed, many such reports and advisory documents appear to stereotype families of children with learning difficulties and assume that they all have similar needs and that we know what those needs are and can meet them.
It was this realisation that led us to the research described in this book. We had been engaged in research on early development, family support and intervention with a cohort of 181 families who each had a child with Down’s syndrome born in Greater Manchester between August 1973 and August 1980 (The Manchester Down’s Syndrome Cohort). During our many discussions with the parents, a large number of issues began to emerge. Some families appeared to be experiencing difficulties, describing relationship problems, difficulties with the children and feelings of restriction and isolation. Others spoke of their concerns about the services they received, or about the reactions of others to themselves and