Currently, there is no clear consensus about the best ways to measure outcomes and change, and gain meaningful feedback from children and young people with learning disabilities and their families.
Research shows children and young people with learning disabilities experience higher rates of emotional and behavioural challenges, have less access to services and are underrepresented in research.
This emphasises the importance of this British Psychological Society’s (BPS) Division of Clinical Psychology (DCP) funded project, in collaboration with the Child Outcomes Research Consortium (CORC).
As practitioners and citizens, the Equality Act gives us all responsibility to not discriminate and to make reasonable adjustments for children and young people with learning disabilities.
This project reports on what works and what gets in the way in measuring outcomes and gaining feedback (described in this project as ‘Hearing the Voice’) for, with and from children and young people with learning disabilities, their families and networks.
The project recognises that we need to measure outcomes and hear the voices across different levels, from individual support, service-level and communities, and across different kinds of activities. Hence, the project’s learning is contextual and developmental rather than focusing narrowly on specialist services.
The project aims to advance and grow ‘best practice’ in gathering feedback and using outcome measures with children and young people with learning disabilities (CYP-LD), their families and networks.
CORC hosted and participated across all project activities. Jeni McElwee, Neil Phillips and Ro Rossiter, from the DCP’s Children, Young People and their Families Faculty LD Network, and Professor Eric Emerson, led project streams.
We gathered, analysed and integrated information from surveys, databases, literature, networking, consultations and workshops across practitioners and organisations (voluntary sector and professional), and directly from children and young people with learning disabilities, and some broader neuro-diversities, their parents and carers on measuring outcomes and change, and gathering feedback/hearing their voice.
The project also needed to consider and include pandemic-related issues, as well as the need for more focus and action on equalities, diversity and inclusivity, particularly racism and more consideration of intersectionalities.
The project materials, learning and revised guidance are now live on the CORC website. They include a project summary and revised guidance, reports on survey findings on measures in use, the Hearing the Voice/gathering feedback good practice examples, thematic analysis and guidelines, tables signposting organisations and resources for ‘Hearing the Voice’ and for measures particularly for PMLD and service-level evaluation.