The aim of this six-month project (November 2000 – March 2001) was to evaluate the need for an independent advocacy service for looked after children in Leeds who have communciation impairments, funded by Save the Children Fund UK, with co-funding from an ESRC fellowship award.
Previous research with disabled children, young people and their families has frequently highlighted the value of independent advocacy. This is particularly the case for disabled children who spend time away from home (for example, in respite care units, residential schools, hospitals, foster families, or with chared carers). There have also been numerous recommendations that advocacy could positive promote the rights of children who have complex communication impairments, many of whom are marginalised from consultation and decision making in service planning and provision.
This short project is based on an analysis of questionnaires sent to parents of disabled children by Social Services and the Children’s Rights Office, and follow up work with a smaller number of children and families. This project web page also provides information about existing advocacy resources for disabled children and young people in the UK.
Documents available on-line
This is a small-scale, focused piece of work with a particular group of young people who may have very specific needs. However, it will be important to recognise the diversity of individual needs within this group, both in the methods adopted and in any recommendations. Statistical interpretation will need to be balanced with qualitative data about specific needs and preferences.
The first phase involved quantitative and qualitative analysis of questionnaires sent to parents of disabled children who also use looked after services. The initial focus was on those who suggested that their child had an identified communication need (or whose answers to other questions suggested that they did).
In the second phase, we selected a smaller sample of responses for follow up. This involved a theoretical sampling frame, in which we prioritised the need to represent breadth and diversity of need (rather than a purely statistical representation). In doing this, we sought to find out more about the views of young people and their families across a range of impairment needs, communication methods and living situations.
We prioritised contact with those families who appeared to identify a lack of availability of preferred communication in significant settings, as well as those who specifically identified the need for an advocacy service. We made initial contact by phone or letter and arranged a convenient time to talk further.
We were not able to visit all of these people in person (and thereby adequately involve all of the young people concerned) in the time available. Using telephone interviews enabled us to gain the views of relevant family members with very limited resources. However, the active involvement of young people should be prioritised as a next step in the process.