Care co-ordination and key worker schemes for disabled children: results of a UK-wide survey.

AIM: To investigate the prevalence and nature of care co-ordination and key worker services for disabled children and their families.
METHODS: Postal survey of 225 Children with Disabilities Teams across the UK.
RESULTS: Out of 159 questionnaires returned (70%), 35 (22%) reported having a care co-ordination scheme, with 30 (19%) of these providing key workers for families. The majority had multiagency and parent involvement in setting up and overseeing the schemes. However, multiagency funding was less common and funding for many schemes was short term. Different models of key working were apparent. Five schemes employed full-time key workers. In 21 schemes, professionals key worked with a few families as part of a larger case load, and in three schemes, both types of key workers were employed. Most schemes provided initial or ongoing training for key workers, but a few provided neither of these. DISCUSSION: The proportion of areas having care co-ordination or key worker services is consistent with findings on research with parents of disabled children, which reports that less than one-third of families have a key worker. The extent of multiagency involvement in planning and overseeing the operation of the service was positive but joint funding was more problematic. There was considerable variation in service models and as yet, little is known about whether or how such variations relate to outcomes for children and families. Further research will investigate these issues.