HERE TO STAY

People with Learning Disabilities

from Ethnic Minority Communities

including New Migrants

Professor David Sallah

Dr 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 aims

• To 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 questions

• How 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)

• practitioners• service providers in:

– health, social care and education– statutory, private and voluntary sectors

• policy makers• commissioners • 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 researchers

• delivering 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

Definitions

Learning 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

Definitions

By 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… Methodology

• To 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 services…workforce

Methodology

• Focus 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 services…service users

Methodology

• 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 evidence

• Research 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 services

How many people…Findings

• estimated 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) and

the special education needs census (children,2011)

area source Overall number of people with

LD

White-British with LD

Other than White British

with LD

Unknown ethnicity

Case A SNR (adults) 1165 1042(89%)

112(10%)

11(1%)

SEN (children) 2661 2162 (81%)

474(18%)

25(1%)

Case B SNR (adults) 734 633(86%)

96(13%)

5(1%)

SEN (children) 612 343(56%)

212(35%)

57(9%)

Comparison of ethnicity breakdown of general population

and population of people with learning disabilities

  Case A   Case B  

Ethnicity breakdown of population of people with LD (2010/2011)

adults children adults children

Overall no 1165 2661 734 612

White British 1042 (85.4%) 2162 (81%) 633 (86%) 343 (56%)

Non ‘White British’ 112 (9.6%) 474 (18%) 96 (13%) 212 (35%)

Unknown 11 (0.9%) 25 (1%) 5 (1%) 57 (9%)

Ethnicity breakdown of population (ONS, 2011)

All 312,925 308,063

White British 277,050 (88.5%) 202,822 (65.8%)

Non-White British 35,875 (11.5%) 105,241 (34.2%)

Percentage of people with LD in population

Overall no 3826 (1.22% of all) 1346 (0.43% of all)

White British 3204 (83.7%) 976 (72.5%)

Non ‘White British’ 586 (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 population

• knowledge base: information collected from service providers, commissioners, policy makers and service users

• information 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