This study, by a team at the University of York Social Policy Research Unit, sought to identify desired outcomes of support services from the perspectives of disabled children, young people and their parents; to explore managers’ and practitioners’ perspectives on outcomes; to work with local authority staff, children and parents, to develop ways of collecting outcome information that can be used in practice; and to pilot and evaluate the use of outcome assessment in practice.

The project took place within three local authorities, selected to cover different organisational and geographic structures and to ensure inclusion of diverse socio-demographic groups, including ethnic minorities. It looked at families including children with different conditions and impairments, and represented groups identified as causing concerns for service providers.

They were:

• children with complex health care needs (CHN)
• children who do not communicate using speech (NS)
• children with autistic spectrum disorders (ASD)
• children with degenerative conditions (DC).

A total of 95 families took part in the study.

Amongst the many findings, the researchers found that supporting mother-father relationships was a crucial outcome – and that parents identified recognising and meeting fathers’ emotional needs; supporting their adjustment to the diagnosis; and increasing their involvement in consultations with professionals; as key ways to do this.

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Priorities and Perceptions of Disabled Children and Young People and their Parents Regarding Outcomes from Support Services