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Children with severe intellectual disabilities are at increased risk of presenting with self-injurious, aggressive and destructive behaviour. Severity of these behaviours is an important predictor of psychological and behavioural service use by people with intellectual disabilities. However, studies suggest that the needs of children with intellectual disabilities and their families are not being met. The aims of the present study were to: (1) describe the self-injurious, aggressive and destructive behaviours and subsequent support needs of children with severe intellectual disabilities attending special schools in one major city within the UK, (2) compare teacher and primary carer ratings of behaviour and service need and (3) explore the extent to which the needs of children with intellectual disabilities are being met in terms of contact with relevant specialist services. Questionnaires were completed by teachers and primary family carers of children with a severe intellectual disability. Results indicated that at least 5.3% and 4.1% of children showed at least one behaviour at a clinically significant frequency and management difficulty respectively. Primary carers identified more children with significant behaviour difficulties and support needs than teachers. The odds for children presenting with high levels of the behaviours of interest for having a service need for behavioural intervention were at least 13 times those for children not showing the behaviours, yet only doubled for contact with a specialist relevant health-care professional. These results quantify the magnitude of the substantial gap between level of need and relevant support received. [ABSTRACT FROM AUTHOR]

The rights and needs of people with intellectual disabilities are being acknowledged within Department of Health policies. In spite of this, however, it is frequently cited that people with intellectual disabilities are vulnerable to many health problems but have poor access to health-related services. There are many factors that can act as barriers to people with intellectual disabilities enjoying good health and accessing services. These include: (a) a lack of clarity regarding responsibilities for ensuring that health policies are operationalized; (b) social and residential aspects of life being emphasized within the quality of life framework for evaluating services for people with intellectual disabilities, with health as an under-represented domain; (c) a lack of reliable and valid measures that can be used with carers and people with intellectual disabilities to explore health, particularly in comparison to literature on the general population; (d) potential communication difficulties (between the person with intellectual disabilities, their carers and health staff) that can impact on decision-making processes from early identification of health problems through to the stage of gaining appropriate treatment. These areas are discussed giving rise to questions and challenges for policy makers, researchers and clinicians. [ABSTRACT FROM AUTHOR]

Health status is an important domain of quality of life of people with intellectual disabilities. This paper describes the development of a self-report health status measure for use with people with intellectual disabilities living in staffed community-based accommodation, and reports preliminary reliability data for the schedule.Question and response items were adapted from a well-established measure (SF-36) used in the general population incorporating subscales such as General Health, Physical Functioning, Bodily Pain, Vitality, Mental Health, and Sensory Functioning. A variety of closed and open response formats were used based on the growing literature examining methods for interviewing people with intellectual disabilities.Internal reliability and response consistency were investigated. Reliability for Physical Functioning, General Health and Bodily Pain was reasonable, but was unsatisfactory for Sensory Functioning, and Mental Health.The findings are discussed in light of the challenge of eliciting reliable responses from people with intellectual disabilities. Question methodologies can be built upon in further research. [ABSTRACT FROM AUTHOR]

We evaluated the independent association between adaptive behavior, communication and repetitive or ritualistic behaviors and self-injury, aggression and destructive behavior to identify potential early risk markers for challenging behaviors. Data were collected for 943 children (4-18 years, M = 10.88) with severe intellectual disabilities. Odds ratio analyses revealed that these characteristics generated risk indices ranging from 2 to 31 for the presence and severity of challenging behaviors. Logistic regressions revealed that high frequency repetitive or ritualistic behavior was associated with a 16 times greater risk of severe self-injury and a 12 times greater risk of showing two or more severe challenging behaviors. High frequency repetitive or ritualistic behaviors independently predict challenging behavior and have the potential to be early risk markers for self-injury and aggression of clinical significance. [ABSTRACT FROM AUTHOR]