Estimating the prevalence of severe learning disability in adults

Learning disability (LD) represents local authorities’ second highest level of social care expenditure yet the amount of predictive information available to help care commissioners plan appropriate services is very limited. This research paper presenting the results of a DH funded project, develops evidence-based estimates of the prevalence of complex learning disability among the adult population, and the prevalence of adults with a learning disability living with a parent in order to inform the commissioning of appropriate services.

After examining some of the reasons for poor recording of data in this area – including a lack of consistency in the definition of learning disability, which this paper seeks to address – the document describes in detail IPC’s methodology for producing age-banded estimates of two specific populations:

• Adults living with complex or severe learning disabilities; and
• Adults with learning disabilities living with their parents.

Estimates are developed by working with the local authorities with the most comprehensive and consistent LD registers, and ultimately identifying the only two with sufficiently detailed information to enable reliable projections to be made – a number that is itself illustrative of the poverty of recorded data on LD populations.

The paper concludes with a summary of key findings, including the impact increased longevity among the LD population might have in families where the primary care giver may die. Specific recommendations are made for addressing the lack of detailed and systematic data collection.