Here to Stay - people with learning disabilities from ethnic minority communities and new migrant communities

HERE TO STAYPeople with Learning Disabilities from Ethnic Minority Communities including New Migrants

Professor David SallahDr Olga Kozlowska 26th September in Birmingham and 10th October 2013 in London

Rationale for research The research evidence shows that people from ethnic minority communities experience insufficient and inappropriate services DoH, Valuing People (2001) and Valuing People Now (2009)There is a need to provide evidence on learning disabilities and ethnicity DoH, Learning Disabilities and Ethnicity: A Framework for Action (2004)There is a need to address equality issues and improve well-being of this population Equality and Human Rights Commission, How Fair is Britain? The first Triennial Review (2010); Equality Act 2010; HM Government, The Equality Strategy - Building a Fairer Britain (2010)

Research aimsTo explore what happens to people with learning disabilities from ethnic minority and new migrant communities in terms of access to the services

To explore how can we improve their experience.

Research questionsHow many are receiving support from learning disability services? What is their experience of using services?And what happens to those who are not receiving any support and how are they coping?How can the services engage with the ethnic minority and new migrant communities to promote their wellbeing and improve their life chances?

Research population(nationally and locally)practitionersservice providers in:health, social care and educationstatutory, private and voluntary sectorspolicy makerscommissioners family carers people with learning disabilities

Benefits of the research This research is: filling knowledge gap-improve the knowledge base of service commissioners/providers, family carers and wider communities and researchersdelivering new information- information on ways of engaging with communities and meet future needs of people from black and ethnic minority communities and new migrants bringing improvement- improve health and emotional well-being of people who needs the service - improve independence, choice and well-being within the community- increase partnership and promote services for people with learning disabilities

DefinitionsLearning disability includes the presence of: a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with; a reduced ability to cope independently (impaired social functioning); which started before adulthood, with a lasting effect on development.

Valuing People, 2001 DefinitionsBy ethnic minorities we mean groups other than white British.

By new migrants we mean people who are not British citizens but resident permanently or temporarily in England; this includes asylum seekers, refugees, seasonal workers and travelers, from all ethnic groups from within and outside of the European Union.

How many people MethodologyTo estimate prevalence of learning disabilities in this group, we approach health, social care and education organisations, and organisations working with migrants and people with learning disabilities. area: England, Black Country (Wolverhampton, Dudley, Sandwell, Walsall)information collected: ethnicity, nationality, country of birth, language, religion What happens to peoplein and outside servicesworkforceMethodologyFocus groups and surveys with service providers, commissioners and policy makers to explore their understanding of the problem.

More than 300 participated in the online survey (survey open throughout duration of the project)

More than 100 participated in the face-to-face interviews

What happens to peoplein and outside servicesservice usersMethodology Interviews with people with learning disabilities and/or their family carers to explore their experiences

We are still recruiting (Request to the service providers in the pack) for interviews

Main barriers faced when collecting evidenceResearch is not a priority in times of high time and money pressures experienced by service providers

Lack of continuity of policies, structures and networks of experts at the times of change

Apparent lack of awareness of learning disabilities outside learning disability servicesHow many peopleFindingsestimated number of 1,144,000 people with learning disabilities (moderate, severe or profound) in England in 2012 (IHAL, People with LD in England, 2012) what stands for 2.13%ethnicity breakdown

Prevalence of LD in the ethnic groups onthe special needs register (adults,2010) andthe special education needs census (children,2011) areasourceOverall number of people with LDWhite-British with LDOther than White British with LDUnknown ethnicityCase ASNR (adults)11651042(89%)112(10%)11(1%)SEN (children)26612162 (81%)474(18%)25(1%)Case BSNR (adults)734633(86%)96(13%)5(1%)SEN (children)612343(56%)212(35%)57(9%)Comparison of ethnicity breakdown of general population and population of people with learning disabilitiesCase ACase BEthnicity breakdown of population of people with LD (2010/2011) adults children adults childrenOverall no1165 2661734 612White British1042 (85.4%)2162 (81%)633 (86%)343 (56%)Non White British112 (9.6%) 474 (18%)96 (13%)212 (35%)Unknown 11 (0.9%) 25 (1%) 5 (1%) 57 (9%) Ethnicity breakdown of population (ONS, 2011) All312,925308,063White British277,050 (88.5%)202,822 (65.8%)Non-White British35,875 (11.5%) 105,241 (34.2%) Percentage of people with LD in population Overall no3826 (1.22% of all) 1346 (0.43% of all) White British3204 (83.7%) 976 (72.5%)Non White British586 (15.3%) 308 (22.8%)What could be done Consensus building a process of consultation to produce guidelines how to make services visible and available to this populationknowledge base: information collected from service providers, commissioners, policy makers and service usersinformation transformed into statements (to inform the guidelines) bringing perspectives of various practitioners for multi-disciplinary and inter-agency working

Next steps Wider consultation, including the service users

Implementation of guidelines