METHODS OF INVOLVING DISABLED CHILDREN AND YOUNG PEOPLE IN CHILDREN’S SERVICES PLANNING

There has been a discernible movement in recent years away from apaternalistic approach in the delivery of public services. Increasinglyprofessionals and users share some responsibility for decisions about theservice to be provided. The idea of partnership between professionalsand clients is encouraged as this can improve outcome, contain care costs,raise satisfaction as well as improving the quality of research. To identifypossible models of involvement of children and young people in servicesprovided by health and social care, education and the voluntary sector,seven senior executives of a variety of statutory and voluntary agencieswere interviewed by a 16 year old school-pupil using an agreed semistructuredschedule. Questions covered the services provided to childrenand young people and the associated planning process. Interviews wererecorded and transcribed for qualitative analysis. The key issuesuncovered were (a) time is needed for capacity-building; (b) a need to"get-real" (be pragmatic); (c) the public sector is not a leader in childparticipation, the voluntary sector has a more developed user-involvementapproach; (d) start with involvement in planning for individual care,before becoming strategic; (e) use advocacy as appropriate; (f) olderchildren who are frequent service users are more likely to respond thanyounger children who don’t use the system; (g) needs assessment requiresuser participation; (h) different types of condition/disability requiredifferent approaches; (i) information from routine care can informstrategy; and (j) feedback is possible by survey, suggestion box orcomplaints system. Eighteen models of potential user involvement wereidentified, including focus groups, reference /user groups, pupil council,advocacy, and independent visitor and through the process of normalprofessional practice. To gain an understanding of the process, these7models were mapped onto a user involvement scale, first described byArnstein in 1969, and then onto a two dimensional scale combining userinvolvement with communication level.Promising methods of user involvement include:a. “You tell-us, we put it all together”. Integration of existing datafrom regular case reviews, especially for children looked after by thesocial services (Arnstein step 3),b. “Helper” or an advocate especially for younger children and themore disabled young person (Arnstein step 5), andc. “You all decide” in a peer-led focus group (Arnstein step 6 or 7).By performing such multi-agency research, ideas for practicedevelopment can be found which have worked in another context. Afurther sharing of these ideas with young people is necessary in order toidentify favoured approaches to user involvement in strategic planning.