Black and Minority Ethnic Groups, Learning Disability, and the Need for Ethnicity Data

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By Dr Wahida Shah Kent

People with learning disabilities from black and minority ethnic (BME) groups are often referred to as ‘invisible’ or ‘hard to reach’.  Through the lens of universal services, such as Education and Health, it can be seen that this group is over-represented within the learning disability population, demonstrating increased prevalence of some conditions.  However, there is a lack of routinely collected data, to provide robust evidence.

Increased prevalence of learning disabilities amongst BME groups not only impacts on individuals and families, but also whole communities, and wider society. It also reinforces racial inequality, social exclusion, and isolation, and negatively impacts physical, emotional, and psychological well-being. To be able to assess inequalities and target resources appropriately, it is essential to have complete and accurate data.  This will be dependent on organisational values, skills and knowledge, and will require a commitment from all levels of organisations as well as a strong skill set from researchers. We need to highlight this lack of critical data, and to be advocating for its collection.

Reports on health inequalities and outcomes by ethnic group emphasise the necessity of overcoming barriers to make way for complete and accurate recording of ethnicity. The need for good quality and complete ethnicity data has been reinforced by the Equality Act 2010, which places responsibility on authorities to tackle inequalities and target services appropriately.

For my PhD study, I struggled to find a nationally representative dataset which contained comprehensive ethnicity data on the topic I was researching. The paucity of ethnicity data is a concern.  Despite the over-representation of learning disabilities amongst BME groups, they are almost always under-represented in terms of service use amongst both voluntary and statutory service providers.  However, much of this data is anecdotal. Discrimination can routinely and successfully only be challenged if researchers and organisations are able to demonstrate this in the analysis of ethnically coded datasets. Accurate ethnicity data would enable experts to assess inequalities in health and access to services, and help ensure resources are targeted appropriately.

We need to include the voice of BME citizens with learning disabilities in our research, and to shed light on their lived experiences.  Is there ethnic variance?  In what way? This knowledge would help influence policy and practice in health and social care and provide answers to some of the challenges faced by service providers who are trying to reach BME learning disabled groups.

As a researcher, who advocates for decolonising of research, as well as encouraging practitioners to adopt an intersectional approach, I believe it is important to ensure the inclusion of this group in research, and for ethnicity data to be routinely collected to inform policy and the commissioning of specialist support services.  In order to produce whole population solutions to challenges experienced by society, we needed to produce research which is inclusive of whole populations, irrespective of ethnicity.