Young people with learning disabilities with behaviour that presents a challenge to services will usually have significant and complex needs which present additional challenges for planning transition from support from children’s to adult services.

The authors of this paper carried out a survey of all the young people, between 16 and 18 years of age with learning disabilities and challenging behaviour that were identified in an inner London borough. At the time of the survey, between 2006 and 2008, they were all in the process of transition to adult services.

The researchers were interested in looking at socio-demographic and clinical characteristics of the young people involved and to try to establish their pattern of service use and the costs of their care.

What they did was to develop a toolkit to measure the mental and physical health, challenging behaviour and service use of the young people in the sample.

They used:

• Strengths and Difficulties Questionnaire, a brief behavioural screening questionnaire which ask about a number of individual attributes, some about some positive and some negative
• Challenging behaviour scale, used to record staff reports of incidence, frequency and ‘management difficulty’ of behaviour
• Client Service Receipt Inventory (CSRI), a questionnaire for collecting retrospective information about use of health and social care services, accommodation and living situation, income, employment and benefits which can be used to calculate service costs and total costs of care.
• Socio-demographic data form which gathers information on social indicators in populations.

They identified 27 young people in transition who had behaviour that presented challenges to services. 23 of this group also had a mental health diagnosis and 18 of them also had a diagnosis of physical difficulties.

What they found was that the severity of challenging behaviour did not correlate with the cost of care. They found that informal care accounted for the highest proportion of the total cost of care (66%) and education was the second largest contributor at 22%.

The study showed that evidence on transition outcomes for young people with complex needs and learning disabilities and associated costs is currently lacking.

They recommend the need for further research to support the development of guidance for the commissioning of appropriate services.

Urban adolescents with intellectual disability and challenging behaviour: costs and characteristics during transition to adult services, Barron D et al., in Health & Social Care in the Community, 21: 283–292