Transition to adult services and adulthood for young people with autistic spectrum conditions

Researchers: Bryony Beresford, Nicola Moran, Patricia Sloper, Wendy Mitchell, Linda Cusworth, Katharine Weston, Gemma Spiers and Jennifer Beecham (PSSRU, Kent)

Funder: Department of Health

Duration: November 2009 to April 2012

There is some evidence from research that for many young people with autistic spectrum conditions (ASC) the process of transition from child to adult services is problematic. Current policy developments and the growth of multi-agency working may lead to improvements in this situation. However, there is little research which can identify the components of models of good practice in transition services or the costs of such services. Further, there is little detailed research specifically on the transition experiences of young people with ASC and their families, or on the specific practices of transition services for such young people. This study will provide in-depth qualitative data on the support provided for young people with ASC and their families in five case study areas. This will include support provided by the multi-agency transition services and the support provided for any young people with ASC who do not meet eligibility criteria for such services. It will explore managers', staff, parents' and young people's views on the processes and outcomes of transition planning and support. Quantitative data on parents' and young people's satisfaction with service support; met and unmet needs; services used; and perceptions of receiving coordinated support, will also enable comparison between different services and different groups of young people with ASC.

Aims

The aims of the project :

to investigate the roles of multi-agency transition services in relation to young people with ASC, and the arrangements that are in place for coordinating services for young people with and without learning disabilities
to explore young people's and parents' experiences of planning for transition and making the transition from children's to adults' services
to explore the costs and outcomes for young people of the transition process
to identify aspects of good practice in this area of work – what works, how does it work?
to investigate sources of funding and costs of different models of transition services.

Methods

The study will build on our previous study of multi-agency transition services for disabled young people in five case study areas and information from another small study we carried out in 2008 on arrangements for transition for young people in out of area residential placements. The main sites for this study will be three of the case study areas from the previous study, all of which have multi-agency transition teams/workers, and two additional area that has also set up a multi-agency transition service encompassing young people with ASC. The case studies will examine in depth the differing models of transition services in the five areas, assessing their costs, evaluating their effectiveness in meeting the needs of young people with ASC and their families, and identifying factors within the models contributing to greater or lesser effectiveness.

In these case study areas, interviews will be undertaken with managers and staff to explore the organisation and operation of transition services and staff views of the effectiveness of the services in supporting young people with ASC through transition.

The effectiveness of the services in providing co-ordinated care and in meeting young people’s and parents’ needs will be investigated through questionnaires to all young people with ASC and their parents who are receiving, or have received, transition services, focusing on amount of service use, satisfaction with the services, processes of care and met and unmet needs.

In order to explore views of the services in more depth, interviews will be carried out with a sub-sample of young people with ASC and their parents who are going through or who have been through the transition process.

Cost-related analyses will provide descriptive results on costs of such services.

Policy and practice aims

There is little research which explores transition for young people with ASC to identify the components of good practice that are associated with more positive experiences for young people and their parents. The proposed research will address these issues in order to inform standards of good practice in services for young people with ASC and their families at transition.

If you require further information about the project, please contact Nicola Moran