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Challenges of inclusion in the first ever national survey of people with intellectual disabilities

*Sally Malam, TNS-BMRB 
Eric Emerson, Centre for Disability Research, Lancaster University  
Ian Davies, Central England People First 

Keywords: Intellectual disabilities, inclusion,

The call from the Department of Health in England to design and conduct the first ever national survey of the population of adults with intellectual disabilities (formerly known as mental retardation) presented extreme challenges. This is a group that has traditionally suffered high levels of social exclusion and who have significant impairments in communication and understanding. As a result, survey information has typically been collected from proxy respondents.

There were three key challenges that needed to be addressed: 1)Putting together an inclusive research team; 2)Defining, mapping and accessing a population of 2-3% of English adults some of whom were in receipt of services from an array of different providers, but many of whom received no services at all, effectively ‘off the map’; and 3)Designing and administering research tools that would maximize the number of people with intellectual disability who could answer on their own behalf.

This paper will set out the work undertaken to address these challenges, including: 1)Developing a strong research team, including partnership with a self-advocacy group, particularly to feed into the survey design and the interpretation of the results; 2)Mapping the population, in order to develop a multi-stranded approach to constructing a representative sample frame based on people’s current housing situation; and 3)A lengthy development and consultation phase to design a suitable informed consent procedure, and research tools that were flexible enough to meet the needs of an incredibly diverse population.

While the report of this research was published in 2005, such a project is yet to be repeated in England or (to our knowledge) attempted elsewhere. The research produced a wealth of information on a group who face daily challenges in making their voices heard, and who had previously been dismissed as virtually impossible to research in this way.