Families and Their Children with Down's Syndrome: One Feature in Common

By Elizabeth A. Byrne; Cliff C. Cunningham et al. | Go to book overview

7

Professionals and Services (1)

‘Parents understandably want a single door leading to assessment, explanation and treatment. They need a co-ordinated service of care, therapy and education, with regular reviews of the child’s progress, leading to advice and support.’ (Court Committee on Child Health Services (DHSS, 1976, para. 5.11)). It is clear from preceeding chapters that at some stage in their life cycle, most families of children with learning difficulties have needs that can only be met by statutory support services. The extent and type of needs may vary widely from one family to another and from one stage to another within the life cycle of the same family. They may range from needs for information, counselling or advice, to needs for specific services such as respite care, benefits, specialised medical treatment or speech therapy. In this, and the following chapter, we describe the families’ experiences of statutory support services and their views about the services they received.

The ideal is where services are tailored to meet the individual needs of families and thus complement the families’ own ‘structure for coping’ (Bayley, 1973). However, this does not always happen. Indeed, for some families, statutory support services may not only fail to meet their needs but may also be an added source of strain: ‘contacts with services were a major source of problems (for parents), which often assumed greater importance than problems arising more directly out of the child’s handicap.’ (Lloyd-Bostock, 1976, p. 325). Some of the possible reasons for this mismatch between family needs and the services offered will be considered here.

The first set of reasons relates to the complexity of the service network. Dealing with this network may require resources of

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