SCIE Research briefing 4: Transition of young people with physical disabilities or chronic illnesses from children's to adult's services
Published April 2004
Updated April 2005
Introduction - What is the issue?
There are two key issues in transition: becoming an adult and achieving independence and changes in the actual services used. It is estimated that there are almost 156,000 adolescents (aged 16-19) with a disability in the UK: over 4,000 have a severe disability and there is evidence that numbers are increasing. Most children with physical disabilities or chronic illness will survive childhood and have improved life expectancy. During adolescence, they will experience change in a number of areas: from paediatric to adult health services, school to higher education or work and childhood dependence to adult autonomy. For disabled and chronically ill young people both the planning process and the actual move to adult services can be difficult, frightening and stressful. Associated problems can occur such as social isolation, a lack of daily-living skills, difficulties in finding work and additional problems in family relationships, such as over-protectiveness by parents and low parental expectations. Transition can also cause considerable stress for families and carers. A method for helping young people manage the transition process and take their place in the adult world is effective transition planning: this will involve both life stage planning and planning in change from children's to adult services.
What are the implications?
Components of good practice for transition planning are likely to include: specific service provision which is multidisciplinary, holistic, planned/anticipatory and provides an element of continuity. Training for staff in transition planning and services is likely to be beneficial, particularly if they are motivated.
One survey of health care professionals found that they wanted planned transition programmes based on clinical protocols for young people with chronic illness. The goal of transition planning must therefore be to provide high quality services, offer choice and control to young people and maximise their education, training, employment and social opportunities.