The four-year study, by the University of York's social policy research unit, has found that what an outcome means for a disabled child could sometimes be very different to what an outcome would mean for a non-disabled child.
Commissioned by the Department of Health, the Outcomes for Disabled Children and Their Parents study says: "There is a need to widen the definitions and indicators of keyconcepts in these frameworks totake into account the viewsand capabilities of disabled children."
Bryony Beresford, senior research fellow at the unit, said the outcomes are not always right for disabled children: "It's more about broadening out and realising that some of the definitions are not appropriate," she said.
The research, which looked at 100 children and young people with a range of disabilities aged between birth and 19 in three different local authorities, also found there was a major omission in terms of communication in the five outcomes.
"Communication is a central outcome for many disabled children and its importance should be explicitly recognised within the Every Child Matters framework," said the report.
Beresford added: "The key finding from interviews with children was the importance of communication in the framework. It does feature, but it's not given sufficient priority or emphasis." She added that being able to communicate well would help disabled children achieve harder-to-meet outcomes.
The study examines outcomes for parents and siblings of disabled children. It finds that parents feel they spend too much time doing caring tasks and do not have enough quality time with their child, that they want to maintain family life by ensuring they share experiences as a family and that the mother-father relationship stays intact.
Mark Robertson, head of information and publications at Contact A Family, welcomed the research's attention to parents. "What is refreshing is that it sets out what parents aspire to for themselves which is often an issue that we're concerned about," he said.
www.york.ac.uk/inst/spru
