Background

There is now an extensive body of research on the support needs of families with disabled or chronically ill children. Other research has charted their experiences as service users, although to date, research consulting directly with children is limited. Overall these studies have shown that families have a wide range of support needs but these needs often remain unmet. At the same time, reports from parents, professionals, the voluntary sector and researchers reveal that support services and ways of interagency working do exist throughout the UK, which are highly valued by disabled children and/or their families. However, a significant problem exists in sharing information about these services, both with professionals working in other authorities or with different client groups and with families themselves. At the moment, there is not a national strategy or system which can offer accessible information about services or methods of interagency working that are valued by families, to either service agencies or families themselves. This project sought to address this information gap by identifying and disseminating examples of specific services and ways of interagency working which disabled children, young people and/or their families reported as being beneficial or valuable.

Research objectives

• To develop criteria for deciding what are ‘best examples’ of services via parents, children and practitioners consultation groups. Involving disabled children and young people is particularly important due to their past marginalisation.
• To draw up a list of valued services and disseminate this via the world wide web and a printed directory.
• To facilitate the sharing and exchange of experiences, information and ideas of good practice amongst families of disabled children or young people and practitioners.

Establishing the Project

• Literature Review - The project began with a brief review of the sparse literature on parents’ views of quality in services, as well as the even more limited literature on children’s views of services. This review was used as a resource by the project team and consultation groups.
• Formation of Consultation Groups - Working as far as possible with existing groups that SPRU has contact with, the project drew on the advice and expertise of users (parents, disabled children and young people) and practitioners.

National Search for ‘Best Examples’

• National Survey of Families - Drawing a national sample of families from the Family Fund Trust database, a postal survey was sent to approximately 10,000 households. Each family received two versions of a short questionnaire - one for parents and the other for children or young people. The questionnaire described the criteria for ‘best examples’ drawn up by the consultation groups, and asked each family to report any support service which they consider to be particularly good or helpful. Families were also able to contact the project team on a Freephone line. Those families whose first language is not English were offered translated versions of the questionnaire.

• National Press and Magazines - Notices were placed in a range of magazines and journals inviting readers to contact the team for a copy of a slightly modified questionnaire.

Collection of Information about Nominated Services   All services nominated were contacted and given an information sheet about the project together with a pro forma for the service manager or relevant professional to complete.

Collection of Information    The project team worked with the consultation groups to draw up a short list of services (approximately 200) which might be suitable for inclusion in the directory. Information collected was analysed to identify themes emerging from descriptions of services.

Visits to Services on the Short List   Each service on the short list was visited by an independent observer from the team of Family Fund Trust Visitors. These visitors interviewed the service manager and/or other relevant professionals, observed the service and compiled a report for the project team.

Deciding the Content of the Directory   The information collected by the Family Fund Visitors was used to draw up a final list of services (maximum 100) to appear in the directory.

Development of Website and Print Version of the Directory   Working with specialist consultants both versions of the directory (website and print) were designed to be accessible to people with different levels of comprehension and reading ability. The format upon which information was entered onto the website and directory was decided in discussion with the consultation groups.

Launch of Directory and other Dissemination   The website and directory was launched at a widely publicised event. All individuals and organisations involved with the project received a summary of the outcome of the project and an information leaflet about the website and directory. Families who responded to the survey were offered a free copy of the print version of the directory. A national ‘mailshot’, providing information about the directory to all local authorities and relevant organisations, was carried out.

The overall aim of the project was to create a directory of ‘best examples’ of support services which have been commended by disabled children and their families. Visit the website at http://www.sharingvalue.co.uk

Publications

Show Abstract...

2002

Sharing value, 2002
Clarke, S., Mitchell, W. and Sloper, P., PMLD Link: the bulletin of news and information for everyone working with people with profound and multiple learning difficulties , 14, 3, 11-13 . Sharing Value Directory , 2002
Mitchell, W., Clarke, S. and Sloper, P., York Publishing Services Ltd . 2001

Quality in services for disabled children and their families: What can theory, practice and research in children's and parents' views tell us?, 2001
Mitchell, W. and Sloper, P. , Children & Society, 15, 4, pp.237-252.