Originally posted here.

The Centre for Research in Primary Care at the University of Leeds was commissioned by the Department of Health to conduct a scoping study of services for people with learning difficulties from minority ethnic communities. The study consisted of a review of the literature and interviews with key respondents. While people with learning difficulties from minority ethnic communities and their carers face considerable problems in accessing relevant services, there are also examples of approaches and projects which seek to meet their needs more appropriately. The main points highlighted in this report are as follows.

Introduction

● Minority ethnic communities face substantial inequalities and discrimination in employment, education, health and social services.

● The higher prevalence of learning difficulties in South Asian communities has been linked to high levels of material and social deprivation. These may combine with other factors such as poor access to maternal health care, misclassification and higher rates of environmental or genetic risk factors.

● People with learning difficulties from minority ethnic communities experience simultaneous disadvantage in relation to race, impairment and, for women, gender. Negative stereotypes and attitudes held by service professionals contribute to the disadvantage they face.

Service principles

● The principles which underpin service planning and provision need to take account of the particular needs and values of people from different minority ethnic communities.

● Partnership with minority ethnic community groups is needed to influence service planning, monitoring and evaluation and to meet local needs. Groups may need support to take part in joint ventures. Consultation exercises require the involvement and support of community organizations if they are to succeed.

● The concept of advocacy needs to be developed in some communities and advocacy or self-advocacy groups need secure resources in order to develop. Schemes promoting advocacy and independent living skills may need to work with families as well as individuals with learning difficulties in recognition of family structures which are different to those in majority ethnic communities.

● An understanding of independence that emphasizes individuality may run counter to the values of collectivism and close family relationships that exist in some communities. The role of family and community networks needs to be taken into account when planning services for individuals.

Planning better services

● Support networks for minority ethnic carers and people with learning difficulties can act as gateways to a range of support services. Outreach is needed to include those who cannot attend groups. A variety of activities and appropriate publicity are needed to increase awareness of service provision within minority ethnic communities.

● Bilingual staff and interpreters are needed to improve communication and access to services. Recruitment of minority ethnic staff is needed at all levels in service organisations, with adequate support and training to help them perform their roles. Training for all staff is needed to improve competence in cultural awareness and prevent the marginalisation of minority needs. Cultural sensitivity and a level of continuity between home and other environments enable the greater involvement of people from minority ethnic communities and encourage the take-up of provision.

● Barriers to independence in education and employment result in limited choices and low expectations. Restrictive attitudes towards disability within minority ethnic communities and in the wider context need to be addressed.

● Empowerment requires information, choice and involvement in decision-making. Support groups can increase participation and control for minority ethnic people with learning difficulties and their careers, as well as providing emotional support. However, such groups are generally small-scale and isolated and may be unable to provide progression to other provision if cultural needs are not recognized in other services.

● Service providers need accurate and ongoing information from and about minority ethnic communities to meet their needs adequately. Monitoring procedures are currently insufficiently able to identify unmet need, general patterns of use or comparative service performance.

● Integrated services are likely to be better resourced and given a higher priority than specialist services. Although the ideal is a quality mainstream service that is sensitive to the needs of all users, the cultural needs of some minority ethnic service users are currently more likely to be met in specialist provision, though this is generally under-resourced and insecure. Decisions about the extent and nature of services should be made at a local level in consultation with service users and informal carers. Specialist services do not eliminate the need to remove racist practices and attitudes from mainstream provision and to develop accessible and appropriate integrated services that will meet the needs of all members of the community.

Conclusions

● Empowerment for communities requires that policies, principles and services be developed, in partnership with those communities, to meet the needs of people with learning difficulties and their carers more appropriately.

● Individuals are empowered through services which recognise their needs, including cultural needs, and offer information, choices and involvement in decision-making. Advocacy services are needed in order to access appropriate services and provide support to individuals to adopt roles that are appropriate within their own communities.

● Much information is already available about the needs of people from minority ethnic communities, though gaps remain (particularly in relation to the views of people with learning difficulties themselves). What is needed, now, is a commitment to develop services to address those needs.

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