Research on Learning Disabilities and Ethnicity: Lessons for Transition Services

1. Research on Learning Disabilities and Ethnicity: Lessons for Transition Services Ghazala Mir Ethnicity Training Network University of Leeds

2. Research evidence • Ethnicity and inequalities • Ethnicity and disability • Ethnicity and learning disabilities • Mir et al 2001 • National Ethnicity Surveys of Partnership Board activity 2005 – 2007 • US studies on transition and ethnicity in health and education • REF Better Health Briefing: Effective Communication

3. The planning and communication process • Involves expectations and assumptions • Is affected by language, values and beliefs • Ethical, legal and financial reasons for improving the quality of these processes

4. Transition review and plans • Understanding assessments, plans, frameworks • Having opportunities and aspirations about the future • Having services that help to fulfil ambitions • Should address social activities and relationships (Alborz 2003; VPST Transition Champions Pack)

5. UK evidence on transition • Most young people with learning disabilities leave school without a transition plan • Almost half had little or no involvement in plans made • Topics covered were not priorities of families • Transition planning made little difference to what happened after young people left school • Few post school options • No ethnic breakdown of 283 families involved (Home Farm Trust/Norah Fry Research Centre

6. Ethnicity and transition • Across ethnic groups, young people see themselves/their families as key players in planning for transition, not professionals • Planning in home context more accessible and productive • Mismatch between student and school goals (education, housing for minority ethnic young people). • Could be embarrassing, like ‘getting into trouble’. • Lack of support for student priorities; young people as recipients rather than agents of planning • Home planning focused on strengths/opportunities; emotional support; providing choices, discussing priorities (Trainor 2005, Journal of Learning Disabilities)

7. Other relevant research • Growing proportion of younger adults from Bangladeshi and Pakistani communities (Emerson and Hatton 2008) • Carers from minority ethnic communities more isolated/ lower expectations that services will help (Hubert 2006; Mir et al 2001) • Extent to which transition issues addressed for children depends on quality of parent-provider relationships – known to be poorer for BME communities • Minority ethnic service users less likely to receive transition support – reflects wider literature • Improving interaction a means of improving transition process (Scal and Ireland 2005)

8. Key Messages about Interaction 1 Information about services/assessments/ plans in relevant languages/formats 2 Employing staff from minority ethnic communities at all levels of an organisation increases cultural competence within it 3 Families need to be meaningfully involved in the communication process 4 Effective processes require action at the institutional as well as individual level (Mir 2007)

9. Improving transition information • Awareness of services • Having a communication strategy • Providing the right information at the right time • Accessible information • Translated materials • Access to verbal advice from trusted individuals

10. Staff from minority ethnic communities • Interpreters and bilingual advocates: cultural brokers • Direct communication • Addressing employment/social inclusion – determinants of health • Skilled recruitment panels • Contribution to training – formal and informal • Changing the service culture

11. Staff from minority ethnic communities • Providing support • Preventing marginalisation • Matching grade and authority to expectations

12. Involving Families • Understanding the context in which decisions about transition are made • Collective structures and independence/interdependence • Avoiding conflict where possible and negotiating solutions • Family attitudes towards services • Drawing on support from within communities

13. Independence • Focus on individuality, self-determination • Potential for alienating families that value collective decision-making • Status of different value frameworks • Independence within a family setting • Interdependence a cross-cultural concept • Negotiated provision involving families increases trust/improves opportunities • Resources for work on negative attitudes Mir et al 2001

14. Institutional action • ‘Optional’ approach to addressing needs • Numbers of children coming through transition unknown to most Partnership Boards • Less than half of Partnership Boards have detailed information on children with learning disabilities from minority ethnic communities in their area • Partnership Boards wanted more information on experience of services by minority ethnic communities and how services could be improved • Work with young people one of most commonly reported domains of good practice (National Survey on Ethnicity and Learning Disabilities 2007)

15. Institutional Action • Assessing existing policies/practice and representation for bias: legal responsibility • Monitoring – ethnicity, language and religion • Linking data to planning and commissioning • Raising expectations of all staff • Supporting competence through training and partnerships • Two way communication on a long-term basis • Involvement in decision-making • Measuring satisfaction, outcomes and complaints (Mir 2007 REF Briefing)