A Transition Guide for All Services - Transition Information Network

Participation of families in the transition process‘The success of initiatives to involve users and carers should be judged notby how many people take part but by the amount of change that takesplace in the services people receive and the quality of their lives.’ 40?WhoDisabled young people, families, all professionals working with disabledyoung people and their families with responsibility to support their fullparticipation in planning for their futures?WhereAll services and agencies in contact with disabled young people and theirfamiliesChapter 3: Participation and further supportParticipation – familiesIntroductionFor disabled young people, their parents 41 are often at the heart ofbrokering support services and communicating their needs to a range ofagencies. They often act in a ‘key worker’ type role and are the mainsupport to their children. Their views and full participation therefore areessential during transition. Although it is important to engage with disabledyoung people separately from their parents when seeking their views andwishes, parents, siblings and other significant people need to be at theheart of the planning process.Supporting participationIn order to participate at all levels, parents require information beforemeetings, access to information on local resources and support fromidentified professionals.A number of local authorities have parent representatives attending thelocal children’s trust board and a greater number have some kind of subgroup of parents’ representatives for families with disabled children whichfeeds into local strategic planning. Participation at this level improvesservices and ensures parents feel empowered, it also helps relationshipsbetween professionals and parents, as time spent together helpsprofessionals understand the pressures that are on parents, and similarlyhelps parents to understand the constraints that are placed on professionals.They often find they make strong partners to campaign for change.40 Joseph RowntreeFoundation, Social CareSummary 3, 199541 We use the term‘parents’ here to meanparents and carers.42 S332A Education Act1996.All local authorities have a legal duty to provide information, advice andsupport to parents of children with special educational needs (SEN). 42 Thisprovision should be at ‘arms length’ from the local authority so that parentsare assured that the advice and information they receive is impartial, andthat the people they receive it from are independent of any decision-makingprocesses; Parent Partnership Services are the local organisations whichdeliver this. Some Parent Partnership Services are based in the voluntarysector but most remain within the local authority. Most services offer accessto Independent Parental Supporters (IPSs) who are volunteers trained to50