Meeting the support needs of people from minority ethnic groups
Research by a group from Birmingham University has shown the importance of understanding what is relevant to people with learning disabilities from minority and ethnic groups. The report’s authors were Michael Larkin, Gemma Unwin, Biza Stenfert Kroese and John Rose.
Study: Access to Social Care Learning Disabilities
This study identified aspects of services important to people with learning disabilities and developed resources including short films and sets of activities (Tools for Talking, www.ToolsforTalking.co.uk) to be used by service users and service providers.
Thirty two adults with learning disabilities from different minority ethnic groups in the West Midlands were interviewed about their understanding of ‘support’, their level of involvement with and experiences of services, their views of the support they needed, and the support they received, and the ways in which this met their goals and priorities. Interviews were sensitive to the cultural context of people’s relationship with services using a ‘Culturegram’, or talking tool, developed to help participants talk about the cultural aspects of their identities in their everyday lives.
Research in the UK indicates that people with learning disabilities from minority ethnic groups do not access the support services they are entitled to and tend to be less satisfied with services. Past research with families (particularly South Asian British families) shows families can be frustrated and angered by the experience of having to ‘fight’ to access services, and that many are disappointed by some of the services they receive. Few studies have collected data from adults with learning disabilities themselves. This does not, however, negate the importance of providing better support to families (Roy et al., 2010).
Many social care services are not only acceptable but are also greatly appreciated. Service users were mainly content with services but did not make this appraisal in the context of having to ‘fight’ for them (as their families might have done). Instead, they were very grateful for what they received and, for the most part, were keen not to be overly critical of services. Some had lost support, due to cuts to services, and this could be distressing.
Relationships with paid carers and support workers can be a very important and meaningful part of a person’s interpersonal life. When asked about services, participants talked about their relationship to their support workers, most describing positive connections with their current support workers. Some also expressed distress at changes in their continuity of care, due to service cuts. When they did talk about organisations this was in relation to previous support.
Good support means having a good relationship with the support workers. The competence and reliability of the worker were the key components of a ‘good service’. Continuity of care was important because it is about the maintenance of positive relationships as well as access to activities.
‘Independence’ means different things to different people (in different contexts). For some, independence was a long-term goal and there was a clear pathway to it. Independence could mean ‘living independently’ with little or no support from services, or it could be more abstract, such as ‘being able to do what you want, when you want.’ For others it was a process representing an aspect of personal development. Increased independence was to be achieved through learning specific skills, such as travelling without support, budgeting or managing the home. Services were perceived as playing a key role in this.
The term ‘minority ethnic group’ is complex and not well-captured by demographic categories or cultural stereotypes. Participants understood their cultural identities in complex ways. Some held ‘mono-culturally consistent’ positions on issues such as religion, diet, relationships and family; others drew upon multi-cultural frameworks. They had very few complaints about the cultural appropriateness of the services they received – this was not the critical issue for deciding whether a service was good. They were generally keen to emphasise that staff tried to treat all service users fairly and with respect.
• The term ‘minority ethnic group’ conceals complex identities, commitments, interests and needs, which are not well-captured by demographic categories or cultural stereotypes.
• ‘Independence’ means different things to different people (in different personal, family and cultural contexts).
• When support is good, positive relationships are a key part. Relationships with paid carers and support workers can be a very important and meaningful aspect of a person’s interpersonal life.
• Many of the services which are available are not only acceptable but also greatly-appreciated by people with learning disabilities from minority ethnic groups.
This study provides important insights into the ways that individuals with learning disabilities view their cultural identity, relationships, support, and independence. The practical resources produced can inform service provision, by emphasising the importance of sensitive planning regarding any changes to services (including changes to support workers, day services, reductions in support), the importance of mutual understanding and good communication in relation to personal and cultural needs, and the importance of continuity of care and a relational perspective on service development. It should be remembered that the study was undertaken during a time of severe cuts in services and this may have set a context in which service users were keen to communicate the message that their services were greatly valued.
References and further reading
Azmi, S., Hatton, C., Emerson, E., & Caine, A. (1997). Listening to adolescents and adults with intellectual disabilities from South Asian communities. Journal of Applied Research in Intellectual Disabilities, 10 (3), 250-263.
Bonell, S., Underwood, L., Radhakrishnan, V., & McCarthy, J. (2012). Experiences of mental health services by people with intellectual disabilities from different ethnic groups: A Delphi consultation. Journal of Intellectual Disability Research, 56 (9), 902-909.
Pestana, C. (2011). A qualitative exploration of the life experiences of adults diagnosed with mild learning disabilities from minority ethnic communities. Tizard Learning Disability Review, 16: 5, 6-13.
Roy, A., Buffin, J., Li, O.M. & Virgo, L. (2010). Is information enough? Exploring the information priorities of families of people with a learning disability from Pakistani communities. London: Mencap.
Disclaimer: This study was funded by the NIHR School for Social Care Research (the views expressed are those of the authors and not necessarily those of the NIHR SSCR, NIHR, Department of Health or the NHS).