Tools for measuring the impact of services on the wellbeing of the 1.5 million people in the UK with learning disabilities are falling short. Current methodologies focus on factors that are viewed as less important for people with learning disabilities or use lengthy question sets and complex language that isn’t accessible. There’s also a lack of consistency in approach.
Relying on evidence drawn from wellbeing measures that exclude people with learning disabilities puts decisions made by service providers and a sizeable amount of the public purse at risk. Almost half of all social care activity for people aged 18-64 relates to people whose primary need is a learning disability and some £4bn is spent collectively by organisations in the social sector that support this community too.
“Nothing about us without us”
We spoke with organisations that support people with learning disabilities and with academics and commissioners. Most importantly, we heard directly from people with learning disabilities themselves. These conversations helped us understand the problems with current wellbeing outcome measurements and highlight opportunities for improvement.
Five steps to improve wellbeing measures for people with learning disabilities
- Develop and test a new set of outcome questions tailored specifically towards the wellbeing domains of people with learning disabilities.
- Establish the evidence base for using a government-approved question as the anchor for wellbeing valuation in economic evaluation.
- Ensure that these tools provide a multi-format delivery with a guiding tool to support people with a range of capabilities to respond.
- Formulate stronger guidance for capturing changes in wellbeing over time.
- Create a new longitudinal research study focused specifically on people with learning disabilities.
We want to level the playing field for people with learning disabilities by establishing more consistent ways of measuring the impact of the things that affect their lives. This report is a first step towards that goal.
We are grateful to the many stakeholders who contributed to this report through their time, insights and reflections. This includes those who responded to our call for evidence — CASBA, Clear Outcomes Charity Research, Parity for Disability, Sense, Thrive and UCL — as well as the wider group of organisations and experts we engaged with throughout the project, including RMResearch, Seafarer’s Project, Open Theatre, Local Government Association, Newcastle Government (Commissioning and Procurement), Mason Charitable Foundation (MCF), Hft Learning Disabilities Allies, DHSC, LSE, State of Life, Leeds University, National Care Forum, NHS, the ONS Quality of Life Team and Bede House.
In particular, we would like to thank members of the steering group — Ingrid Abreu Scherer, John O’Dwyer, Georgina Smerald and Nerissa Steel — for their guidance and valuable input throughout the project.
We are especially thankful to our lived experience groups from Mencap, Achieve Together and Bemix. Their openness in sharing their experiences has been central to shaping both our understanding and the recommendations set out in this report.
Finally, we are grateful to Spirit of 2012 for their generous funding, which made this work possible.
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