Hinduism, sikhism, Islam and Buddhism. such differences within the south asian community can mean people have different cultural beliefs and views.
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Improving access to services for minority ethnic communities Raghu Raghavan examines the changes needed to provide appropriate care for people from ethnically diverse backgrounds Summary This article explores ethnicity, cultural diversity and learning disability, focusing on the key issues and barriers for access and use of services. It highlights the need for all staff to develop cultural competence to ensure that services are able to meet the diverse needs of individuals and their families and carers. Keywords Learning disabilities, minority ethnic communities, access to services, cultural competence Last year, at an international conference on learning disability, a participant asked me about some of the issues on ethnicity and learning disability I had covered in a paper. I was sitting with a group of researchers and practitioners from England, one of whom asked whether those present had people from black and minority ethnic (BME) communities in their areas. One said: ‘We do not have any where we are. Hence, we do not bother about the BME issues in our locality.’ I was shocked by this response. Do we only have to be aware of cultural issues if there are BME people in our locality? It appears that in some cases ethnicity and diversity agendas are added on to fit with policy, rather then being seen as integral part of service and workforce development. We live in a society that is increasingly culturally diverse. In this context, our ethnic identity plays an important role in terms of our beliefs, attitudes and behaviours. All human beings have an ethnic identity, 14 September 2009 | Volume 12 | Number 7
but often when we talk about ethnicity or cultural diversity we do not think of our own ethnicity but tend to think about people with different skin colours, cultures or religions to our own. The term ‘ethnic minorities’ is used by most service providers, but its use has been criticised, notably by Ratcliffe (2004), who states that this may be insulting to the people it is applied to because it implies that only ‘minorities’ have an ethnicity. The Valuing People white paper (Department of Health (DH) 2001) says the needs of people from BME communities with learning disabilities are often overlooked and therefore that these people face social exclusion. In the same year the DH published a report on learning difficulties and ethnicity – a scoping study of services for people with learning disabilities from minority ethnic communities (Mir et al 2001). This suggests that people with learning disabilities from BME communities face substantial inequalities and discrimination in health and social care. This message is reiterated in the government’s Annual Report on Learning Disability (DH 2005). To solve the difficulties faced by these people the Learning Disability Task Force published a guide called Learning Disability and Ethnicity: A Framework for Action (Valuing People Support Team/DH 2004). This was intended to help the Learning Disability Partnership Boards and services to include people with learning disabilities from BME communities in service planning. In addition to these policy guidelines, this period also witnessed a number of publications in scientific and professional journals LEARNING DISABILITY PRACTICE
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Feature about the unmet needs of people with learning disabilities and their families from BME communities (Emerson and Robertson 2002, Hatton et al 2002, Azmi et al 1996). The key messages in these publications indicate the need for culturally sensitive services that respect these communities’ cultural and religious beliefs.
The story so far Most children and adults with learning disabilities live with their family carers, most of whom are unaware of the types of services available for their relatives. According to the 2001 census about 8 per cent of the population (4.6 million people) were from different ethnic groups (www.statistics.gov.uk). Indians were the largest population, followed by Pakistanis, those of mixed ethnic backgrounds, black Caribbean, black Africans and Bangladeshis. It is estimated that nearly 985,000 (2 per cent of the general population) people in England have a learning disability (Emerson and Hatton 2008). The overall prevalence estimate of learning disability in BME communities in the UK is not known, but we do know that there is an increased prevalence of severe learning disability in the UK’s south Asian community (Emerson et al 1997). For example, in a study of disability in children of different ethnic populations in Derbyshire, Morton et al (2002) found that Pakistani children had a higher prevalence of severe learning disabilities, severe and profound hearing loss and visual problems, compared with the Indian community and the mixed Caucasian and black Caribbean population. A number of factors may contribute to the higher prevalence of these conditions in this community. Many studies reveal a strong link between socio-economic factors, such as lack of nutrition, poor housing, poor child-rearing practices and the high prevalence of learning disability (Mink 1997). In many south Asian cultures, first-cousin marriages or consanguinity are suggested as the cause of poorer birth outcomes. However, this practice should not be singled out as the main causative factor, and Ahmad and Adkin (1996) suggest that health professionals often use consanguinity to shift the blame for disability to parents and reinforce negative stereotypes of certain cultures and traditions. Other important factors include access and use of
It is suggested that parents are more likely to stop seeing a disability as tragic when they have more information 16 September 2009 | Volume 12 | Number 7
antenatal health care, lack of awareness and use of genetic screening to identify the risk factors, and the problems associated with communication as a result of language barriers.
Barriers to accessing services A number of studies have identified key barriers in accessing and using health services by people from BME communities with learning disabilities and their family carers. Knowledge and awareness of services A key factor that affects service access and use by many people with learning disabilities from BME communities is a lack of adequate knowledge and awareness of the types of health and social care services available locally. Many families have insufficient information about the help and support they need. Chamba et al (1999) argue that given the lack of awareness and service support, it is not surprising that unmet needs are reported so highly in BME communities. Language issues Many families from south Asian communities cannot communicate fluently in English and this is clearly identified as a reason for the lack of knowledge and awareness of services (Mir et al 2001, Hatton et al 2002, Raghavan and Waseem 2007). In most south Asian families, mothers have a greater responsibility than fathers in caring for a disabled child (Mir et al 2001). Family carers who cannot speak English face particular problems in communicating their concerns to professionals and in understanding consultations. Many families rely on their non-disabled children for interpreting. Even when families can speak English, poor communication between them and the professional, rather than language difficulties themselves, limit their understanding of the diagnosis and interventions prescribed. Not knowing where to access services Families with children with learning disabilities face problems in contacting health or social services to explain the nature of their difficulty and the type of help required for their disabled child. They indicate that the lack of a single point of contact is a problem (Raghavan and Pawson 2009). Same service for all A ‘colour-blind’ approach, where services are offered on the same basis to all, poses a major barrier for people from BME communities. This approach ignores the cultural values and belief systems of the young person and the family, and fails to acknowledge that services are geared towards the dominant white majority culture. Inappropriate nature of services Another major barrier in accessing services is the inappropriateness of the services offered. For example, providing a support worker without any satisfactory awareness LEARNING DISABILITY PRACTICE
Feature or knowledge of learning disability creates more stress and work for the families, rather than helping them. Moreover, if the support worker is unaware of the family’s cultural and religious beliefs, this can also cause more strain for the family. Religious beliefs Service use may be affected by particular beliefs and perceptions held by families, especially those from south Asian communities. Religious beliefs play a crucial role for most of these families, who may consult religious or traditional healers in the hope that these can make their child ‘better’ (Raghavan et al 2005). It is suggested that many Pakistani and Bangladeshi people feel religion has a great influence on how they lead their lives (Modood et al 1997). Cinnirella and Loewenthal (1999) examined religious and ethnic group influences on beliefs about mental illness and reported that faith and prayer were believed to be effective in treating mental illness and that people preferred to see a ‘holy person’. Stigma The stigma of having a child with learning disabilities is an issue for many south Asian parents. Families may be worried about what others may say, especially when communities are so close-knit. Stigma and family reputations are crucial and most south Asians want to keep such issues concerning their family members in the family (Bashford et al 2002). Ethnicity alone may not provide the explanation for increased stigma. Information and resources play a crucial role to support caring for a disabled child. It is suggested that parents are more likely to stop seeing a disability as tragic when they have more information that promotes a positive approach, and when they are able to manage the circumstances without struggling (Mir and Tovey 2003). Cultural sensitivity South Asian families may not access learning disability services because of their experiences or their belief that the services are not culturally sensitive to their needs and wishes – for example, the lack of women-only groups in day care services or for respite care. The lack of BME staff in services to help with the language and other cultural issues is also known to affect access to services. Carers may feel services are not culturally and religiously sensitive to their needs (Azmi et al 1997).
Dissatisfaction Accessing leisure and recreational services also poses problems for many south Asian families. Most carers are dissatisfied with the social and recreational activities available and feel there is not enough to interest young people. They want more daytime activities, as well as things to do at weekends and in the holidays. Uptake of day services is low because LEARNING DISABILITY PRACTICE
Token representation from only one section of a community provides a skewed view of the need for services parents either do not know about them, or they are seen as inappropriate for the cultural and religious needs of the young people (Azmi et al 1997, Emerson and Robertson 2002). The Second National Survey of Partnership Boards, carried out to find out about how services are working for people from BME communities with learning disabilities, paints a bleak picture (Hatton 2007). This survey highlighted that partnerships boards do not conduct any checks on services for people from BME communities. It also shows that ‘the needs of minority ethnic communities are not always thought about when learning disability services are being planned’.
Promoting inclusion Factors that promote diversity and inclusion involve developing cultural knowledge, cultural awareness, cultural sensitivity, cultural reciprocity and cultural competency (Husain 2007). Cultural knowledge involves familiarisation with the selected cultural characteristics and the history, values, beliefs systems and behaviours of the members of specific ethnic group (Adams 1995). Cultural awareness involves developing sensitivity and understanding of other ethnic or cultural groups. This may include changes in attitudes and values. Cultural awareness and sensitivity often relate to openness and flexibility that people develop in relation to others. Cultural sensitivity is knowing that cultural differences and similarities exist, without value judgement. Cultural competence refers to the ability to work effectively with individuals from different cultural and ethnic backgrounds, or in settings where several cultures co-exist. It includes the ability to understand the language, culture and behaviours of other individuals and groups, and to make appropriate recommendations. Learning Difficulties and Ethnicity: A Framework for Action guide (Valuing People Support Team/ DH 2004) stresses that partnership boards should have representation from BME communities. This framework helps partnership boards to examine their local population and explore their links and representation from BME groups. It also stresses the need to recruit and retain staff from BME communities, and to review the policy and practice in the locality with special reference to ethnicity. Token representation from only one section of a community provides a skewed view of the need September 2009 | Volume 12 | Number 7 17
Feature for services. For effective inclusion of people with learning disabilities and their carers from all sections of the minority communities in the locality in the partnership board, every effort should be made to hear their views of users and carers. Services can then build a realistic picture of their views and experiences and reflect this in service planning. For example, the south Asian community includes people from India, Pakistan, Bangladesh and Sri Lanka, who all follow different religions, including Hinduism, Sikhism, Islam and Buddhism. Such differences within the south Asian community can mean people have different cultural beliefs and views about disability, so it is essential to engage with and involve all sections of this community in service planning and delivery.
Cultural sensitivity and competence Malek (2004) argues that delivering culturally sensitive services requires recognition of cultural beliefs and practices at the grassroots level of service delivery and at the strategic level of service planning. To help achieve this, Malek (2004) suggests a range of activities, including: ■■ A policy framework that supports a culturally sensitive response at all levels. ■■ Data collection on BME communities. ■■ Research into theory and practice issues. ■■ Collaboration with ethnic and other agencies to
ensure that the needs of specific ethnic groups are understood and addressed. ■■ Education for staff. ■■ Administrative structures that support the delivery of culturally sensitive services. ■■ Training for clinical and administrative staff to help them to respond sensitively and competently. As well as being culturally sensitive, a workforce should be culturally competent. A provider’s cultural competence can be reflected in its willingness and ability to value different cultures in the delivery of services. This should permeate all levels of an organisation, from policy and practice to training and support. Cultural competence is developmental, community-focused, family-oriented and culturally relevant. It is the continuous promotion of skills, practices and interactions to ensure that services are culturally responsive and competent. Cultural competence enables the workforce to position itself so that it can listen to, understand and clarify the needs of people from BME communities without making presumptions. Staff are encouraged to examine their beliefs and assumptions about other communities. This can help them to shift to inclusive modes of thinking and behave in ways that will enrich the nature of service delivery to people with learning disabilities and their families from all cultures.
Raghu Raghavan is a reader in disability and mental health at the School of Health, Community and Education Studies, Northumbria University
References Adams D (1995) Health Issues for Women of colour: A Cultural Diversity Perspective. SAGE Publications, Thousand Oaks CA. Ahmad W, Atkin K (1996) (Eds) Race and Community Care. Open University Press, Buckingham. Azmi S, Emerson E, Caine A et al (1996) Improving Services for Asian People with Learning Disabilities and their Families. Hester Adrian Research Centre, University of Manchester, Manchester. Azmi S, Hatton C, Emerson E et al (1997) Listening to adolescents and adults with intellectual disabilities from South Asian communities. Journal of Applied Research in Intellectual Disabilities. 10, 3, 250-263. Bashford J, Kaur J, Winters M et al (2002) What are the Mental Health Needs of Bradford’s Pakistani Muslim Children and Young People and How Can They Be Addressed? University of Central Lancashire, Preston. Chamba R, Ahmad W, Hirst M et al (1999) On the Edge: Minority Ethnic Families Caring for a Severely Disabled Child. The Policy Press, Bristol. Cinnirella M, Loewenthal K (1999) Religious and ethnic group influences on beliefs about mental illness: a qualitative interview study.
British Journal of Medical Psychology. 72, 4, 505-524. Department of Health (2001) Valuing People: A New Strategy for Learning Disability for the 21st Century. The Stationery Office, London. Department of Health (2005) The Government’s Annual Report on Learning Disability 2005. The Stationery Office, London. Emerson E, Azmi S, Hatton C et al (1997) Is there an increased prevalence of severe learning disabilities among British asians? Ethnicity and Health. 2, 4, 317-321. Emerson E, Robertson J (2002) Future Demand for Services with Learning Disabilities from South Asian and Black Communities in Birmingham. Institute for Health Research: Lancaster University, Lancaster. Emerson E, Hatton C (2008) People with Learning Disabilities in England. Centre for Disability Research, Lancaster University, Lancaster. Hatton C (2007) Improving Services for People with Learning Disabilities from Ethnic Communities. Report on the Second National Survey of Partnership Boards. Lancaster University, Lancaster.
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Hatton C, Akram Y, Shah R et al (2002) Supporting South Asian Families with a Child with Severe Learning Disabilities: A Report to the Department of Health. Institute for Health Research, Lancaster University. Husain F (2007) Cultural Competence in Family Support: A Toolkit for Working with Black Ethnic and Faith Families. Family and Parenting Institute, London. Malek M (2004) Meeting the needs of minority ethnic groups in the UK. In Malek M, Joughin C (Eds) Mental Health Services for Minority Ethnic Children and Adolescents. Jessica Kingsley, London. Mink I (1997) Studying culturally diverse families of children with mental retardation. International Review of research in Mental Retardation. 20, 75-98. Mir G, Nocon A, Ahmad W et al (2001) Learning Difficulties and Ethnicity. Department of Health, London. Mir G, Tovey P (2003) Asian carers’ experiences of medial and social care: The case of cerebral palsy. British Journal of Social Work. 33, 465-479. Modood T, Bethoud R, Lakey J et al (1997) Ethnic Minorities in Britain: Diversity and Disadvantage. Policy Studies Institute, London.
Morton R, Sharma V, Nicholson J et al (2002) Disability in children from different ethnic populations. Child: Care, Health and Development. 28, 1, 87-93. Raghavan R, Waseem F, Small N et al (2005) Supporting young people with learning disabilities and mental health needs from a minority community. In Making Us Count: Identifying and Improving Mental Health Support for Young People with Learning Disabilities. Foundation for People with Learning Disabilities, London. Raghavan R, Waseem F (2007) Services for young people with learning disabilities and mental health needs from South Asian communities. Advances in Mental Health and Learning Disabilities. 1, 3, 27-31. Raghavan R, Pawson N (2009) The Aawaaz Project: Meeting the Leisure Needs of Young People With a Learning Disability from South Asian Communities. MENCAP, London. Ratcliffe P (2004) Race, Ethnicity and Difference: Imagining the Inclusive Society. Open University Press, Maidenhead. Valuing People Support Team/ Department of Health (2004) Learning Difficulties and Ethnicity: A Framework for Action. The Stationery Office, London.
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