Transition for Teenagers With Intellectual Disability: Carers' Perspectives

Teenagers with intellectual disabilities (ID) have significantly more health problems than the rest of the population and many encounter difficulties accessing the services they need during the transition from children's to adult services. A multidisciplinary, interagency study was carried out in one area of the UK with the intent to estimate the number of teenagers with ID between the ages of 16 and 19, their levels of mental and physical healthcare needs, their carers' perceptions of the transition process to adult services and unmet needs, and to make recommendations on how to address unmet needs. A mapping exercise was carried out to identify all teenagers aged 16-19 with ID known to local services; a postal questionnaire was sent to carers of all eligible teenagers; and then in-depth interviews carried out with a sample of carers. Most of the teenagers had significant levels of ID, multiple problems, and required constant supervision. Most of the teenagers were using a range of health, social care and education services, however, their carers still reported unmet needs; half had difficulty in accessing services. Different patterns of service use and unmet needs were found among the various ethnic groups identified in the sample. Only about a quarter of the carers interviewed were satisfied with the transition process. Authors found that carers were concerned about the lack of information concerning transition planning and adult services, and wanted earlier, more coordinated transition planning. The data confirmed the need for quality information and validated standardized tools that could be used for transition planning. Recommendations are that integrated referral systems for health and social care need to be developed, with links to clear care pathways, and that individual and systemic outcomes should be monitored.