TITLE: Listen to me, too!: Lessons from involving children with complex healthcare needs in research about multi-agency services.
Author: Watson, D; Abbott, D; Townsley, R
Reference: Child Care Health and Development, 33(1), January 2007, pp90-95
Abstract: Research projects and direct consultation in services often exclude the active involvement of children with complex healthcare needs. During a three-year research study into multi-agency services for children with complex healthcare needs, the authors involved children in several innovative ways and tried to discover what impact, if any, multi-agency working made to them. The researchers spent time with 18 children with complex healthcare needs and found that they can take part in research as long as the research is set up sensitively and flexibly. The challenges are considerable, but the benefits far outweigh these, not least being the value that parents, carers and the children themselves place upon being listened to.
TITLE: Reliability of assessing the sensory perception of children with profound intellectual and multiple disabilities: a case study
Author: Vlaskamp, C, Cuppen-Fonteine H
Reference: Child Care Health and Development, 33(5), September 2007, pp547-551
Abstract: This study describes developing a checklist to enable practitioners to determine the behavioural responses of children with profound intellectual and multiple disabilities to sensory stimuli. Reliability of current checklists is low, with a focus on the child’s sensory integration instead of perception. Adjustments were made to improve reliability but this decreased for all components after adjustment. The effect of a smaller item pool was ruled out. The effect of familiarity of teachers as raters was examined. Results show that teachers who know a child well could interpret that child’s behaviour more accurately than persons who were unfamiliar with the child. However, reliability of the checklist remains a problem.
TITLE: Models of good practice in joined-up assessment: working for children with significant and complex needs
Author: Boddy, Janet; Potts, Patricia; Statham, June
Publisher: University of London, 2006, 39p
Abstract: Children with complex healthcare needs and/or disabilities and their families are often in contact with a range of agencies, and subject to multiple assessments. The Common Assessment Framework (CAF), introduced as part of the Every Child Matters provides a means by which any agency can identify and assess at an early stage those children who may benefit from additional support. But less attention has been paid to how to co-ordinate specialist assessments of children with more complex needs, for example assessments by special educational needs services. The research explores the potential for joining up multiple assessments for children with complex health needs and/or disabilities.
TITLE: Growing up matters: better transition planning for young people with complex needs
Author: Commission for Social Care Inspection
Publisher: CSCI, 2007, 53p
Abstract: Families say teenagers with disabilities turning 18 can find it a “nightmare” as they move from children’s to adults’ social services. They can experience problems because local councils fail to provide the same level of support for adults as they do for children. The report urges councils and primary care trusts to work together and develop seamless services for disabled teenagers.