BME Full Report

8/2/2019 BME Full Report

1/43

Over-looked

Communiies,Over-due Change:

how services can

beter suppor BME

disabled peopleI would be grea if people

had he freedom o goabou heir life wihoubeing judged, sared aand piied becauseof ignorance.

Anisha from Middlesex


2/432

Acknowledgemens

We would like to thank everyone who took part in our ocus groups, interviews and case

studies. Without them this study would not have been possible.

Special thanks to:

Julie Charles, and all the team at Equalities National Council

Younus Khan and everyone at Pukar Disability Resource Centre

Leanne Wright and Bradnet

Cate Fisher, Marc Bush, Amisha Koria, Elliot Dunster and Carena Rogers rom Scopes

Policy and Campaigns Team

Liam Synott, Vicky Keeping, Vasu Sagar rom Scope Response

Vicki Butler

All the attendees o the indings roundtable in November 2011

Report author: Robert Trotter

Copyright Policy and Campaigns, Scope

March 2012

Published by Scope, 6 Market Road, London, N7 9PW


3/433

Conens

Foreword by Julie Charles (CEO, ENC) and Richard Hawkes (Chie Executive, Scope) 5

Executive summary 6

1. Introduction 10

1.1. Background 10

1.2. Methodology 11

1.3. Report structure 12

2. Greater unmet needs: Statistical proile o BME disabled people 13

2.1. Prevalence 13

2.2. Population growth 14

2.3. Ageing, ethnicity and disability 16

2.4. Income and household poverty 17

2.5. Employment 18

3. Under-use o services 20

3.1. Lower uptake o beneits and services 20

3.2. Cultural appropriateness 21

3.3. Conclusion 22

4. Subtle needs, inlexible structures: experiences o service provision 23

4.1. Communication diiculties and language barriers 23

4.2. Stigma 25

4.3. Social isolation and amily lie 27

4.4. Migration 29

4.5. Discrimination 31

4.6. Conclusion 32

5. Recommendations or service provision: the Plato model 33

6. Conclusions and key indings 38

7. Recommendations 41


4/434

List of boxes and figures

Box 1: What do we mean by services? 13

Box 2: Deining ethnicity and disability in statistical data 15

Box 3: Main languages spoken in UK 16

Case study 1: Anita 25

Case study 2: Anwar 26

Case study 3: Rubina 29

Case study 4: Remi 30

Good practice case study 1: Bradnet 34

Good practice case study 2: Pukar Disability Resource Centre 36

Figure 1: Percentage o BME disabled people living in household poverty 17

Figure 2: Distribution o net weekly income or disabled men 18

Figure 3: Distribution o net weekly income or disabled women 18


5/435

Foreword

Little research has been conducted into how the lives o disabled people rom black and

minority ethnic backgrounds can be improved, yet there are at least one million Black andMinority Ethnic (BME) disabled people in the UK and this number is growing.

This report Over-looked Communities, Over-due Change jointly published by the

Equalities National Council and Scope, came out o a real need to understand how BME

disabled people, their amilies and carers eel about the services available to them so they

can be improved.

From new demographic research, to a comprehensive review o BME disabled peoples

experiences o public services, Over-looked Communities, Over-due Change presents

clear indings to create greater understanding o this growing group within the population

and makes recommendations or policy makers and service providers o how such servicescould promote better inclusion o BME disabled people.

Through in-depth ocus groups, many BME disabled people report that access to services

can be compromised by poor translation, inconsistent quality o care and weak links

between services and communities. Disabled people are more likely to live in poverty but

BME disabled people are disproportionately aected with nearly hal living in household

poverty. And like all disabled people, many o those rom black and minority ethnic

backgrounds ind themselves socially excluded and pushed to the ringes o society.

Yet despite the reality o peoples lives, there exist pockets o best practice across services

used and relied on by BME disabled people, with many organisations successullydelivering ully personalised and inclusive services.

For the ENC and Scope, this report signiies the start o a journey that we hope will begin

to break down the barriers that exist or BME disabled people between communities and

services, but also between the worlds o disability and race equality. It is critical that BME

disabled peoples voices are heard by those designing and running services so the needs

o this growing demographic are met.

Julie J Charles, Chief Executive, Equalities National Council

Richard Hawkes, Chief Executive, Scope


6/436

Execuive summary

There are at least one million disabled people rom black and minority ethnic backgrounds

in the UK and this number is growing.

Services are not yet ully inclusive or disabled people rom ethnic minority backgrounds,

and many report poor experiences o accessing statutory and voluntary services.

Given the size and expected growth o the BME disabled population, it is also a

demographic imperative that their needs are more ully addressed by policy.

Person-centred, local, and lexible services would be more valuable and accessible

or BME disabled people, but accommodating individual preerences would beneit all

disabled people.

There are at least one million black and minority ethnic (BME) disabled people in the UK.Many live in acute poverty, and ace considerable diiculties in their daily lives. At least hal

live in household poverty, even without accounting or the additional costs all disabled

people ace the true levels o poverty are likely to be even higher.

Demographic changes in the UK mean that there will be many more BME disabled

people in the uture. The BME population overall is growing, but it is also ageing two

trends which are likely to increase the numbers o disabled people rom ethnic

minority backgrounds.

Given this context o disadvantage and population growth, it is increasingly imperative that

we understand and attempt to resolve the diiculties many BME disabled people ace.

This report represents an initial attempt to do so.

Equalities National Council a user-led BME disabled peoples organisation and Scope

carried out the research on which this report is based, which sought to identiy how BME

disabled people, their amilies and carers eel about the services available to them and

how these could be improved in the uture.

Primary research findings:

The irst part o the research addressed some o the gaps in our overall understanding o

BME disabled peoples socio-economic circumstances. Secondary analysis o oicial

datasets has shown that:

There are at least 1 million disabled people rom black and minority ethnic backgrounds

and the population is growing.

There tends to be lower prevalence o impairments amongst BME disabled people o

working age, but over the age o 40 prevalence increases dramatically.

Pakistani and Bangladeshi groups have the highest rates o disability in old age o anyethnic group.

44% o BME disabled people live in household poverty, compared with 32% o all disabled

people and 17% o the population as a whole.


7/437

Individual incomes or BME disabled people are 30% lower than or the general population.

Less than 4 in 10 BME disabled people o working age are in employment.

The second set o original indings we present draws on a series o ocus groups with over

50 BME disabled people, designed to explore the experiences they had o disability and

service provision. The story our participants told us was one o struggling to manage their

complex and changing needs within solid and inlexible service structures. Some o the

common themes they reported include:

Communication diiculties and language barriers: or older people and recent migrants

especially, limited spoken English is a considerable barrier to ull service access. Others

reported a preerence or some level o translation despite good spoken English. Many

people reported diiculties understanding technical, medical or bureaucratic languages.

Stigma: many disabled people ace stigma in their daily lives, meaning that they arenegatively marked out by their impairments. Many o our respondents reported experiencing

stigma, and elt that it remains particularly acute within some ethnic minority communities.

Social isolation and amily lie: Social isolation was widespread among our ocus group

participants, especially or women, migrants and carers. In contrast with other authors,

we ound little to suggest that BME disabled people can rely on their extended amily to

provide care.

Migration: we ound that disabled migrants experience a number o particular diiculties

accessing services, and that being disabled can aect migration decisions.

Discrimination: The experience o discrimination is as widespread as it is or all disabled

people. Buses ailing to stop or blind people; discrimination in education and employment;

bullying at school all were reported during the ocus groups.

Recommendaions for policy-makers:

The indings o our research have a number o implications or government and policy-

makers the unmet needs o BME disabled people are considerable, but have been largely

absent rom both disability and race equality policies. Given the size and expected growth

o the BME disabled population, it is a demographic imperative that their needs are more

ully addressed by policy this is not a community seeking a special plea.

1) Following the UN Committee or the Elimination o Racial Discrimination, we recommend

that the government develops a national race equality strategy, which should address the

needs o disabled people rom BME communities. We also recommend that BME disabled

peoples needs and views are included in the orthcoming disability strategy.

2) We recommend that the government should create a joint implementation plan to deliver

the vision or change set out in these two strategies, which should be led by both the Oice

or Disability Issues and the Government Equalities Oice;

3) The government has a duty to carry out Equalities Impact Assessments when producing

new policy or legislation. We recommend that Equalities Impact Assessments should

consider the eects o policy and legislation on over-lapping equality characteristics.


8/438

Recommendaions for service commissioners

The changing demography o the disabled population means there are a number o

implications or service commissioners in the uture, i they are to ensure the needs oeveryone in their community are met. The role o commissioners is extremely important

or shaping the way a service oer develops in a given area, and or acilitating

partnerships between larger and smaller organisations in order to combine community

and personal needs.

1) We recommend that authorities work with local community groups, disabled peoples

organisations and religious centres to develop coherent and targeted inormation

campaigns in order to build awareness o disability services, and improve attitudes

towards disabled people.

2) As a way o eectively understanding the local community, we recommend that authoritieswork with community groups and disabled peoples organisations to develop an eective

evidence base about local need. We also recommend that ethnicity descriptors be included

in existing methods o data collection on disability services, in order to improve the

available data about BME disabled people.

3) We recommend that authorities set community-led outcomes or project managing service

delivery, which should be co-designed with both community groups and service providers.

4) We recommend that authorities re-organise contracts or service commissioning to better

acilitate collaboration between small and large organisations, which should allow more

consistent, wide-ranging care that meets both personal and community needs.

Recommendaions for service providers:

Combining the indings rom our primary research with examples o good practice rom

service visits and stakeholder interviews, we developed our Plato model or inclusive

service provision. We argue that such a model would create services that would be more

accessible to BME disabled people, but that would also beneit all disabled people.

The Plato model would be:

Person-centred principles

Local community action

Advocacy

Translated communication

Outreach into communities.

While recognising the importance o cultural awareness or service providers, we also want

to see service providers move beyond an approach to ethnic minority disabled people thatsees culture as something ixed, easily deined, and an obstacle to service access. Instead,

our evidence shows that people are relexive about culture: aware, knowledgeable and

capable o thinking o beyond the apparent circumstances o their lives.


9/439

As such, we argue or an approach to services that goes beyond providing cultural

awareness training. Only within a system where the interaction between user and

provider is more responsive to individual versions o culture can inclusion be ully realised.

More concretely, we recommend that service providers are:

1) Person-centred Engage with user-led organisations to better understand the cultural

dimensions o person-centred planning, and improve the planning process.

2) Local Support existing BME disabled peoples organisations and build better working

links between local agencies to create a better local oer, share knowledge more

eectively and capacity build DPOs to help deliver better outcomes.

3) Advocacy develop networks o community and sel-advocates, who can play a critical

role in improving service access and outcomes or BME disabled people.

4) Translation - reresh translation strategies, and work with communities to develop moreeective pre-translated materials.

5) Outreach improve outreach into local communities through strong partnership working

with local organisations and employ dedicated outreach workers, who should also

contribute to the development o community support networks.


10/430

1. Inroducion

There are at least one million black and minority ethnic (BME) disabled people in the UK

and the population is growing. Yet despite experiencing low incomes, proound socialisolation, and high levels o unmet need, BME disabled people are under-using the services

available to them.

These twin acts rame this report, which sets out to answer a simple question: what can

services do to ully include BME disabled people?

Presenting the results o a joint research project by the Equalities National Council (ENC)

and Scope, the aim o this report is to bring together the disability and race equality sectors,

and to strengthen our knowledge base in order to inorm better service provision and drive

social change or all disabled people, whatever their background.

Our key arguments are that:

As a large, growing and substantially disadvantaged group there is a critical need to create

more inclusive services or BME disabled people;

BME disabled peoples needs are the same as or all disabled people, but the extent and

severity o their unmet needs is greater;

Services1 are not yet ully inclusive or disabled people rom ethnic minority backgrounds,

and BME disabled people report poor experiences o accessing statutory and

voluntary services;

Person-centred, local, and lexible services would improve BME disabled peoples

access to services, but a more subtle approach to cultural preerences would beneit all

disabled people.

The challenges aced by BME disabled people are clear; the case or change is clearer still.

1.1 Background

This project is a collaboration between the Equalities National Council a user-led BME

disabled peoples organisation and Scope, a national disability charity. We sought to

understand more ully BME disabled peoples support needs and preerences, and their

experiences o accessing services. We wanted to ind out how BME disabled people,

their amilies and carers eel about the services available to them and how these could be

improved in the uture.

The project was designed to produce recommendations or making services more

inclusive, and to provide an evidence base to improve policy-making. As such, this report

should be primarily relevant to policy-makers, service commissioners, service providers

and researchers.

Throughout the project we worked closely with disabled peoples organisations, who

advised on the direction o the project, the research strategy, and helped us recruit

people or the ocus groups rom their local area.

1 See box 1 or what we mean by services.


11/431

1.2 Mehodology

Our research aimed to bring together the parallel literatures on ethnicity and disability

to promote a better and wider understanding o BME disabled peoples needs andpreerences. Our broader aim or this report is to inorm better service provision across

the disability sector, raise awareness o the high levels o need or BME disabled people,

and begin to outline implications o this work or policymakers.

A number o sub-questions emerged rom these over-arching goals:

What are the key characteristics o the BME disabled population as a whole?

What are BME disabled peoples experiences o service provision?

How can we begin to make services more inclusive or all disabled people, regardless

o background?

To answer these questions we used a three part methodology:

1) The irst part o our research methodology was producing a statistical proile o BME

disabled people. We primarily drew on government datasets, including the Family

Resources Survey (FRS), Households Below Average Income Survey (HBAI), Lie

Opportunities Survey (LOS) and Labour Force Survey (LFS) the principal sources

o national level data or disabled people.

Our intention or the statistical proile was to sketch an indicative outline o the population

rather than a detailed analysis. As such, we ocused on a number o key indicators,including the prevalence, age proile, household and individual income levels, employment

status, and the geography o disabled people in ethnic minority communities.

2) A literature review o the existing research around disability in ethnic minority communities

provided a ramework within which to place our own research. Through this review we

identiied some key gaps in the literature which our own research seeks to address:

Ethnicity and disability are too oten treated as separate issues;

Too little research includes the voices o BME disabled people themselves, instead ocusing

on the views o service providers;

The recommendations made in the literature about services oten treat ethnicity or disability

too simplistically.2

Through the literature review we also sought to provide an evidence base about BME

disabled peoples use o services. The results o this review particularly ed into

Chapter 3 o this report.

3) The third part o our methodology was holding ocus groups with BME disabled people,

in order to understand more ully their needs, experiences and preerences or service

provision. In total, we spoke to nearly 60 people in London, Bradord and Preston, wherewe asked people about their experiences o ormal and inormal care, their understandings

o disability and ethnicity, and what an ideal service would look like. These geographical

locations were chosen because they have some o the largest BME populations in the UK.

2 Notable exceptions include Vernon, A. (2002), User-dened Outcomes o Community Care or Asian Disabled People, JRF, Policy Press: Bristol.


12/432

In order to understand BME disabled peoples needs as broadly as possibly, we opted or a

purposive sampling approach. We held our ocus groups: one with young people, one

each with adult men and women respectively, and one with parents and carers o

disabled children who were users o Scope services. We spoke to people with a range

o impairments.

One key challenge or this aspect o our research was to understand more subtly the

experiences o dierent ethnic groups to disaggregate the unwieldy concept o BME.

Despite being unable to recruit ocus groups separately or dierent ethnic groups, we were

careul to include people rom a wide range o ethnic backgrounds and are conident that

we captured something o their dierent experiences within our study.

Nonetheless, we have reerred in a number o instances to the experiences o BME

disabled people as a uniied group. In doing so we are not suggesting that these groups are

necessarily culturally identical. Rather it indicates a undamental argument o BME disabled

people themselves: that their common experiences are rooted in the experience o

disadvantage, and that this disadvantage exacerbates the barriers to service access

they experience.

1.3 Repor srucure

Our key argument is that BME disabled people have substantial unmet needs, and that

there are clear steps that can be taken to begin addressing these needs. We make this

argument in our chapters.

In Chapter two, we present our overview statistical proile o BME disabled people,

including the prevalence, age proile, household and individual income levels,

employment status, and the geography o disability in ethnic minority communities.

Chapter three presents the results o the literature review, and outlines the evidence

demonstrating that BME disabled people are under-represented in statutory and voluntary

services, and present some o the key explanations given in the relevant literature.

Chapter our introduces BME disabled peoples experiences o using services. We argue

that there is a major gap between the way our respondents described their needs and

preerences as subtle, changing and personal and the solidity and inlexibility theyind in their interactions with service providers.

In Chapter ive we present our Plato model or inclusive service provision, which builds

on the evidence presented in the preceding chapters. Within this model, built around being

person-centred, localism, advocacy, translation and language, and outreach, we have tried

to create an approach to services which accommodates the complexities o working with

the BME disabled community without resorting to a reductive list o cultural practices.

Chapter six brings together the key conclusions and recommendations o each chapter.

By doing so we intend to build a case or a uture research and policy agenda or BME

disabled people.


13/433

Chaper 2. Greaer unme needs: saisical profile ofdisabled people in ehnic minoriy communiies

Chapters 2 4 outline our research indings, concentrating on the demography, under-useo services and experiences o BME disabled people respectively. In this irst empirical

chapter we present our statistical proile o the demography and socio-economic

characteristics o the BME disabled population, ocusing on the prevalence, age proile,

household and individual income levels, employment status, and geography o disability

in ethnic minority communities.

Key findings:

There are at least 1 million disabled people rom black and minority ethnic backgrounds

and the population is growing. There tends to be lower prevalence o impairments amongst BME disabled people

o working age, but over the age o 40 prevalence increases dramatically.

Pakistani and Bangladeshi groups have the highest rates o disability in old age o any

ethnic group.

44% o BME disabled people live in household poverty, compared with 32% o all disabled

people and 17% o the population as a whole.

Individual incomes or BME disabled people are 30% lower than or the general population.

Less than 4 in 10 BME working age disabled people are in employment.

BME disabled people are concentrated in areas o high population, such as London,

South Yorkshire, the West Midlands and Lancashire

2.1 Prevalence

There are at least one million disabled people rom black and minority ethnic backgrounds

in the UK around one in ten o all disabled people.3 There is little doubt that this is an

underestimate o the true size o the population. Partly due to the diiculties omeasurement (see box 2), and partly because o a lack o robust data on the BME disabled

population, it is extremely diicult to produce more accurate estimates. We are conident

that our igure signals something o the size o the population.

Box 1: What do we mean by services?

Statutory services: are services that have been brought into existence by law.

Voluntary services: are services that are not required by law, but are elt to be necessary

by the body providing them, usually a charity or social enterprise.

3 Scope: FRS 08/09; and Prime Ministers Strategy Unit (2005), Improving the Lie-Chances o Disabled People, London: Cabinet Oce: It is likelythat this gure is a substantial underestimate. We calculated the one million gure using weighted data rom the Family Resources Survey, which wecorroborated with ndings rom the PMSU who estimated that 10% o the 11 million disabled people were rom minority ethnic backgrounds. The keyproblem with prevalence estimates is the way disability is dened. The FRS denes disability broadly in line with the Disability Discrimination Act (DDA;replaced by the Equalities Act) as people who have a longstanding illness, disability or inrmity, or who have signicant diculty with day-to-day activities.Yet while this means everyone the FRS consider to be disabled would also be considered as such under the DDA, it doesnt mean that everyone whowould be covered under the DDA is included in the FRS sample. See box 2 or urther detail.


14/434

Although this is not the ocus o our study, it is worth noting that statistically the type o

impairment experienced is broadly the same across all ethnic groups, with the exception

o certain genetic disorders, notably sickle cell anaemia and thalassemia.4 Some authors

also suggest that large numbers o Pakistani children are born with genetic disorders

because o higher rates o inter-amily marriage. However, the evidence or this link ishighly contested and a number o writers have suggested it is an explanation rooted

in prejudice rather than scientiic act; we are cautious about making links between

inter-marriage and impairment.5

2.2 Populaion growh

We know that there are at least one million BME disabled people in the UK but we also

anticipate that this is a rapidly growing population. This is or two reasons.

Firstly, the black and minority ethnic population as a whole is growing. Recent projections

by the Runnymede Trust and the Centre or Policy on Ageing6 show that by 2051 the

non-white population may reach as high as 25 million people, compared with 9 million

in 2010. Increased in-migration and the higher birth rate among ethnic minority populations

account or this numerical increase. Non-white groups are also likely to outstrip the growth

o the white population, leading to the BME population being proportionally more signiicant.

The implication o this is a connected growth in the number o disabled people rom

these communities.

Secondly, the age proile o the BME population is changing. The age proile o ethnic

groups is complicated, but overall the BME population is currently much younger thanthe general population. 30% o the Bangladeshi population are under 15, or instance,

compared with 17% o White British people.7 Although the picture is more complicated or

individual ethnic groups the more established Indian group tend to have an older proile

the White British group remains the oldest individual ethnic group.

4 Newman, T. (2010), Ensuring all disabled children and young people and their amilies receive services which are suciently dierentiated to meet theirdiverse needs, National Foundation or Educational Research: C4EO; Bediako, S. and Mott, K. (2011) Race and Social Attitudes about Sickle CellDisease, Ethnicity and Health, 16(4 5): 423 4295 Ahmad, W. (1994), Refections on the consanguinity and birth outcome debate, Journal o Public Health, 16(4): 423 428

6 Lievesley, N. (2010), The Future Ageing o the Ethnic Minority Population o England and Wales, Runnymede Trust and Centre or Policy on Ageing7 Lievesley, N. 2010


15/435

Box 2: Defining ethnicity and disability in statistical data

Disability prevalence is notoriously diicult to assess. A number o national surveys

measure disability, but they all deine disability in dierent ways. Some deine disability as

described in the Disability Discrimination Act. Others ask whether impairment prevents therespondent rom working. Some include long-term illnesses; others do not. There is no

standard way o deining disability.

There is also no standard way o deining ethnicity and this complexity may explain the

lack o existing data on disability or ethnic minorities. Ethnicity is a luid term that reers

to identity, culture and belonging as well as to religion, nationality and geography.

Pinning down ethnic groups in statistics is a vague business at best, and the broad

categories typically used in surveys oten miss a lot o the subtle dierences between

minority communities.

Further evidence suggests that there can be a dierent understanding o what disabilitymeans or ethnic minority respondents. Having a survey question which asks are you

disabled could well ail to capture individual impairments in communities or whom

disability is an alien concept.

For these reasons, the statistics presented below should be read with caution. But we

remain conident that they are as robust as possible. Where necessary, we have combined

all ethnic groups under the label BME in order to improve sample sizes. We have used

one speciic measure o disability DDA-deined in order to improve comparability.

The results have been checked against other studies, and despite the problems o

measurement they indicate a number o clear and inarguable trends.

In the uture, however, there will be many more older people rom BME backgrounds.

The same Runnymede Trust report estimates that by 2051 there will be 4 million BME

people o pensionable age, and 3 million over the age o 70. There will be a variety o

complex eects caused by this demographic shit. In terms o the disabled population,

the key point is that old age is linked to higher rates o impairment so, simply put, as the

population grows older the rate o impairment will increase.

In short, although we estimate that the BME disabled population is around one million,

this is likely to be an underestimate. We also anticipate that there will be many more BME

disabled people in the uture. This shit has major implications, which we explore in

later chapters.8

8 Data rom the Family Resources Survey shows that hal o all disabled people are over state pension age (Oce o Disability Issues, 2010).


16/436

Box 3: Main languages spoken in the UK

It is extremely diicult to know all the languages spoken in the UK. Nonetheless, it has

been estimated that around 2 million people speak English as a second language.

One o the ew reliable sources we have or knowing what languages are spoken is the

Annual Schools Census, which shows that the ten most widely spoken languages among

children other than English and Welsh are: Punjabi, Urdu, Bengali, Guajarati, Somali,

Polish, Arabic, Portuguese, Turkish, Tamil, French, Yoruba, Chinese, Spanish and

Persian/Farsi (Source: Department or Education, 2010).

This list is ar rom exhaustive, particularly given the increasing diversity o the migrant

population; some o the newer languages in the UK dont have a written orm.

2.3 Ageing, ehniciy and disabiliyThe prevalence o impairments varies signiicantly across the lie course. At working age,

reported levels o impairment are lower in BME groups than or the general population,

but this increases ar more quickly as people grow older.9

At working age, 21% o BME people have an impairment, compared with around 23% o the

general population. This may simply relect the younger age proile o the BME population

younger people in general have lower levels o impairment.

However, it is also likely to be a consequence o under-reporting rather than substantial

dierences in the level o impairment. Evidence suggests that some non-white groups areless willing to report themselves as being disabled something particularly true o Chinese

groups, who have the lowest reported prevalence overall.10 There may also be dierences

in the way ethnic groups deine disability: Western medical discourse is ar rom universal,

and disabled people responding to surveys may not all relate to the term in the same way.

Despite having some o the lowest reported levels o impairment at working age, the rate

o impairment approaching old age increases more rapidly or black and minority ethnic

people. Although everyone has a higher likelihood o impairment in old age, an analysis

by Harriss and Salway showed that the increase in impairment or BME groups was both

proportionally and numerically more rapid.11

She ound that over the age o 40 Pakistani and Bangladeshi groups have the highest

reported prevalence o any ethnic group. The proportion o Bangladeshi men and women

with an impairment is over twice as large as the white British group. Nearly all ethnic

minority groups have higher proportions o impairment in old age, with the notable

exception o Chinese people, who report lower levels o impairment throughout the

lie-course.

9 Harriss, K, and Salway, S, (2009) Long-term ill-health, poverty and ethnicity , Ethnicity and Inequalities in Health and Social Care, 2(3): 39 4810 At working age, the Black Caribbean group has the highest reported level o impairment (Source: FRS, 08/09).11 Harriss and Salway, 2009


17/437

There are two potential explanations or this increased rate o impairment in old age. Firstly,

given that Pakistani and Bangladeshi groups are also some o the poorest in society, a link

between poverty and disability has been widely made. Poverty is likely to aect disability

prevalence in a number o ways, or instance employment type, poor housing, or access

to healthcare.12 A second hypothesis explaining the higher rates o impairment among BMEolder people relates to the increased diiculty o retirement migration or disabled people.

Some older people rom ethnic minority backgrounds preer to retire to their country o

origin, particularly those who are irst generation migrants. Yet the barriers to return

migration are larger or disabled people, such as diiculties travelling, ear o worse

attitudes toward disability or poor healthcare. Good healthcare is also a key reason people

choose to remain in the UK.13 These actors make disabled people more likely to stay in

their destination country, leading to a higher concentration o impairment in the

remaining population.

2.4 Income and household povery

All disabled people ace high levels o poverty, but those rom black and minority ethnic

backgrounds are particularly disadvantaged. 17% o people without a disability live in

household poverty14, compared with 32% o disabled people and 44% o BME disabled

people as shown in the graph below.

This picture o increased disadvantage is also true or individual incomes. On average,

working age BME disabled peoples individual incomes are 30% lower than or the

population as a whole 194.50 a week compared with 285.

15

12 This is an extremely complex debate and the causal links between poverty and health are contested. The intention here is not to give an overview o thedebate but rather to indicate the relevance o such issues.13 Khan and Mawhinney, (2011), The Costs o Returning Home: Retirement Migration and Financial Inclusion14 Household poverty is a relative measure, dened as when a households income is below 60% o the UK average ater accounting or the costso housing.15 Dened as net weekly median incomes.


18/438

The distribution o BME disabled peoples incomes is also much narrower, as shown in the

graph below. This means that not only are the average incomes lower, but the majority o

disabled people live on lower incomes. To be more precise, three quarters o BME disabled

men earn less than the median income or the whole population.

Another way to think about this narrower distribution o incomes is that it acts like a cap on

disabled peoples earnings, showing that they are excluded rom being the highest earners.

Disabled people have less money, and are restricted in their opportunities to have more.

This trend is even more marked or BME disabled people.


19/439

Further, as is the case or the UK population as a whole, womens incomes are lower still.

We estimate that or all BME disabled women the median weekly income is nearly 50%

lower than or non-disabled adults.16 The disadvantage this implies, combined with the

widespread burden o care or ethnic minority women, makes our lack o knowledge about

their situation deeply concerning.

Finally, these income igures underestimate the true extent o poverty or disabled people.

The surveys on which they are based the FRS and HBAI dont account or the

additional costs o being disabled. Costs such as paying or support workers, special

equipment, or transport can seriously erode the amount o income which is available to

spend the same amount o money simply doesnt stretch as ar or disabled people.

2.5 Employmen

Unemployment rates or all disabled people are bleak: only around hal o all working age

disabled adults are in any orm o employment, compared with over 90% o the general

population.17 This is exacerbated by the idea o occupational segregation 35% o disabled

people work in low-paid, part-time or temporary work, and are also less likely to be in highly

paid work.18 Not only are disabled people paid less, but they are also more likely to be in

short-term, low-paid and part-time precarious work which can exacerbate ill-health.19

There may also be links between type o impairment and employment prospects

intellectual and mobility impairments are associated with lowest levels o employment.

Yet employment rates are even lower or BME disabled people. Less than hal arein employment, o whom more than 40% are in part-time or sel-employment. Again,

Pakistani and Bangladeshi disabled people have the lowest rates o employment.

Only 3 in 10 Pakistani and Bangladeshi disabled people are in employment, o whom

hal are in precarious and low paid occupations.

16 Scope: FRS, 08/0917 There are some urther denitional issues here the employment rate varies slightly depending on whether a person reports as DDA-dened disabled,or as having a work-limited activity the latter is slightly lower. This may involve some circularity those out o employment may describe their impairmentas work-limiting regardless. The most disadvantaged group in the labour market are those who report as having both (NEP, 2010).18 Disability, Skills and Employment: EHRC, 201019 For an assessment o the links between employment, risk and ill-health, see Burchell, B.J., Ladipo, D. and Wilkinson, F. (eds.) (2002) Job Insecurity andWork Intensication. London: Routledge


20/4320

Chaper 3: Under-use of services

In the previous chapter we showed that disabled people rom black and minority ethnic

backgrounds experience worse poverty, lower incomes, and are more likely to beunemployed. In this section we present an overview o the existing research looking at

ethnicity and disability, in order to give context to our own indings, demonstrate the need

or research, and highlight the evidence that shows that BME disabled people are

under-using the services available to them.

Key Findings:

BME disabled people are less likely to be receiving beneits Bangladeshi disabled people

have the lowest uptake o DLA o any ethnic group, despite high levels o impairment in

old age;

There can oten be diiculties inding disability services that are culturally appropriate,

or community-speciic services that are accessible or disabled people;

Cultural dierence can be accommodated within existing models o service provision.

3.1 Lower upake of benefis and services

The irst key theme rom the literature review suggests that BME disabled people absent

rom services generally have particular problems receiving their ull beneits, both in termso understanding what beneits they are entitled to and receiving the ull amount o those

beneits. Their lower beneits uptake can help explain why the poorest BME disabled

people have lower incomes than the poorest disabled people overall they arent being as

successully caught by the welare saety net. In some ethnic groups there is an apparent

trend or only those with the severest impairments to claim beneits. 20 Either through cultural

dierences in the way disability is understood, or unwillingness to report as disabled, large

proportions o those eligible to claim beneits are not doing so.

Using data rom 12 pooled quarters o the Labour Force Survey, Salway ound that only

13% o BME men and 12% o women with a long-term limiting illness received DLA; thisstill only rose to 19% or those with an activity limiting condition. 21

Startlingly, Bangladeshi disabled people were ound to have the lowest uptake o DLA

despite being one o the poorest communities. This was true even ater accounting or

other actors like severity o illness.22

This picture was underlined by research conducted by DWP, who ound that BME groups

are more likely to express dissatisaction with the beneits system.23 A quarter o BME

people reported having had diiculties with receiving beneits, compared with 16% o white

people. Over a third submitted a ormal complaint, something which only 20% o white

people did.

20 Harriss and Salway, 200921 Harriss and Salway, 200922 Allmark, Salway, Crisp et al. (2010), Ethnic Minority Customers o the Pension, Disability and Carers Service, Department or Work and Pensions23 Jones and Tracy (2010), Ethnic Minority Customers Experiences o Claiming Disability Benets, Department or Work and Pensions


21/4321

Further, black and minority ethnic disabled people are also less likely to access healthcare

services. Evidence shows that they suer rom poorer health, have a shorter lie

expectancy and yet are less able to access care than the majority white population. 24

Despite large amounts o research, and a variety o local and national strategies or

change including the major Delivering Race Equality in Mental Health initiative introducedin 2005 these problems remain.

Research by Fazil et al indicates that only a minority o the Pakistani and Bangladeshi

disabled people they interviewed had had any contact with hospitals, physiotherapists, and

specialist care.25 GPs, however, provide a notable exception to this trend, and numerous

studies report that GP surgeries provide a key access point to services or BME people.

As can be seen rom this brie review, much o the existing literature on BME disabled

people ocuses solely on access to the beneits system, or to healthcare services. In part,

this report aims to begin the work o better understanding access to wider statutory and

voluntary services.

3.2 Culural appropriaeness

A urther actor identiied in the literature about BME disabled peoples lower up-take o

services is the diiculty o inding services that are culturally appropriate.26 For instance,

Vernon identiied a range o areas where people rom ethnic minorities sought more cultural

awareness rom service providers, including dierences in amily lie, religious obligations,

gender roles, and the use o space within the home.27 Cultural practices can be a signiicant

eature o a persons identity. To limit, deny or diminish the importance o culture can behugely damaging to an individual.

This is not clear cut, and a major challenge o cultural awareness programmes is that the

concept o culture is luid and indeterminate. I this luidity is not recognised, there is a

danger that training can become reductive and stereotyping.28

For instance, there are clear dierences in the meanings attached to disability and ill-health

between ethnic groups some people may believe disabilities should be cured, or that it

is a consequence o sin. Yet there is also evidence to suggest that such prejudices are

alleviated by close contact with medical services. Indeed, western medical paradigms may

provide some relie rom stress or amilies burdened by eelings o shame or stigma.

Further, the clear desire or services to be culturally appropriate doesnt mean that the type

o service or support required is necessarily dierent. Raghavan and Pawson ound that

where linguistic, cultural and religious needs had been met, peoples preerences or the

type o care were much the same.29

24 Department o Health (2003): Inside, Outside: Improving Mental Health Service or Black and Minority Ethnic Communities in England25 Fazil et al (2002), Disadvantage and Discrimination Compounded: the experience o Pakistani and Bangladeshi parents o disabled children in the UK,Disability and Society, 17(3): 237 25326 Ahmad, W. (2000), Ethnicity, Disability and Chronic Illness, Oxord: OUP27 Vernon, 200228 Ahmad, W. and Bradby, H. (2008), Ethnicity and Health: Key themes in a developing eld, Current Sociology: 56(1): 47 5629 Raghavan R and Pawson N (2009) Aawaaz project: Meeting the leisure needs o young people with learning disabilities rom South Asian communities.London: MENCAP


22/4322

The point is that while it is important to be aware o cultural dierence, such dierences

should not be treated as irreconcilable with existing models o service provision. Belie and

culture do not preclude the need or care, and the emphasis should be on enabling sta to

build relationships o understanding and trust with BME customers not repeating simplistic

notions o what any given group do or do not want.

3.3 Conclusion

There is a widely acknowledged truism that service uptake increases with need; the very

poorest are most likely to claim.30 Yet this does not appear to be the case or ethnic minority

disabled people. Pakistani and Bangladeshi groups are strikingly poor, and have high levels

o need, yet all the evidence suggests that they are under-claiming beneits and under-using

services. While some services have clearly improved this should not distract rom the

considerable disadvantage suered in other areas. As Fazil et al have argued, whatTudor Hart called the inverse care law is clearly applicable to BME disabled people: those

in the greatest need are also least likely to be receiving care and support.31 The situation

remains dire and urgent; BME disabled people are not accessing the services which

they need.

30 Allmark et al. 201031 Fazil et al., 2002


23/4323

Chaper 4. Suble needs, inflexible srucures: experiences ofservice provision

Chapter 2 discussed a series o key indicators outlining some o the socio-economicdisadvantage experienced by BME disabled people. Chapter 3 showed that despite this

disadvantage, BME disabled people still under-use the services available to them. In this

chapter, we present the indings rom our primary research to highlight some key themes

o BME disabled peoples experience o being disabled and accessing services.

We strongly argue or a shit away rom explaining these experiences only in terms o

cultural preerences. Instead, our research ound that there is a widespread sense among

those we interviewed that services were elt to be remote, inlexible and poorly

communicated. In short, BME disabled peoples needs as complex as those o the

population as a whole are ailing to be accommodated within service structurescharacterised by solidity and inlexibility.

The indings in this chapter are based on the primary research components o the project.

In total we held ocus groups with 55 people in London, Bradord and Preston. The ocus

groups included disabled young people, adult men and women, and parents and carers

o Scope service users. Participants were rom a range o ethnic backgrounds and with

a range o impairments.

These indings are structured around the key themes o communication diiculties, stigma,

social isolation, migration and discrimination. Each o these sections is introduced with

a summary o the key themes, which are recapped in chapter 5.

4.1 Communicaion difficulies and language barriers

We dont have a word or neurological

Limited written and spoken English can be a serious barrier to service access

or BME disabled people

Poor translation can exacerbate communication diiculties

Our respondents also discussed having diiculties understanding technical medical

or bureaucratic languages

Communication diiculties can aect service access, sel-identity and

material circumstances

The participants in our ocus groups had a mixed reaction to the issue o language and

communication as a barrier to inclusive services. Many o the younger people we talked to

spoke excellent English, and didnt eel this directly aected their relationships with services

proessionals. Especially among those born or educated in the UK, we ound that young

disabled people were conident that they were able to access services that communicate

predominantly in English although this is not to say that there werent other issues limiting

their service access.


24/4324

Yet others spoke to us explicitly about having problems with language. In particular, they

highlighted that or those in later lie, or who have recently migrated to the UK, poor English

can cause clear diiculties. A number o older people or people with older relatives had

ound diiculties in understanding services literature written in English:

Theres no language barrier with me necessarily but its the older people, isnt it?

Others reported a preerence or speaking in their irst language even when they were

comortable with English. Respondents spoke about inding comort in the amiliar, especially

at times o emotional stress, and there was a sense that some aspects o care or impairment

are diicult to translate. Because o this, there was widespread agreement that eective

translation should be oered widely, even to those with good English as a second language.

In short, language barriers can be a serious issue or older people and recent migrants

especially. Some o the consequences in terms o service provision include:

Misdiagnosis by sta: very ew impairments or illnesses present to medical sta with ully

visible symptoms. Patients who dont speak English may struggle to communicate with

their Doctor.

Wrongly assessing disabled peoples needs: this can have serious implications or the care

they are given and prevent people rom expressing their cultural or religious preerences.

Patients ailing to understand their impairment accurately: without eective translation

it can be diicult to communicate the importance o taking medication regularly, or keeping

medical appointments. These misunderstandings can have serious consequences on the

management o peoples conditions.

Unrealistic expectations: i patients dont ully understand what service providers are

oering, there may be an expectation that there will be more available or promised than

is possible. This is particularly true with regard to medical treatment.

Lack o inormation: unless there are eective translation mechanisms, services which

advertise only in English are inaccessible.

A number o people we spoke to also reported explicit problems with translated materials,

which were requently ound to be insuiciently detailed, eatured out-o-date understandings

o impairment, or were revised inrequently and had inaccurate inormation about whatservices were available. Given that translated lealets or CDs are oten the only such

material provided, it is shocking that greater care is not taken to translate these accurately.

Yet there is more to communicating than being able to speak English many people also

reported having diiculties understanding technical medical or bureaucratic languages.

Some people described having diiculty understanding the way in which Doctors spoke

about disability, seeing their impairment through a ramework inormed by a dierent set

o terms or health and wellbeing. As well as the variety o problems associated with

misdiagnosis, there can be issues o sel-understanding people not recognising

themselves in the way illness or impairment is described and thereby eeling alienated

rom the medical proession:

The Doctors dont ever explain anything to you, they dont emotionally help you. They just

tell you what your problem is and thats it.


25/4325

Diiculties communicating in the language o bureaucracy can also have serious material

eects on peoples lives. Many people talked about the problems they had applying or

DLA, which relies heavily on explicit medical terms to assess peoples eligibility. Others

spoke about eeling unable to work the system because o their discomort using a medical

language to describe their impairment. This can have serious inancial consequences, andmay underpin some o the lower uptake o beneits or BME people reported in Chapter 3.

Eective communication by service providers must deal with both language issues and

attempt to overcome the complexities o people having dierent understandings o disability.

Case study 1: Anita

Anita was diagnosed with MS a condition characterised by luctuating levels o severity,

and by an extremely wide range o symptoms. She was born in the UK, spoke English as

her irst language, and was comortable that she understood her condition.

She was given a translated audio CD to give to her Mother, providing inormation about

MS and the available support or someone with her condition.

But the inormation that had been translated onto the CD was only the worst case

scenario it described MS in terms that shocked and rightened Anitas mother,

and caused her signiicant upset.

4.2 Sigma

The irst time you are diagnosed the thing you miss most is this eeling o normality,o eeling like everyone else

Stigma appears to be particularly salient or BME disabled people, especially those with

mental health needs

Dierent understandings o disability exacerbate negative attitudes toward disabled people

Attitudes and knowledge about disability can change through contact with service providers

Stigma reers to the way that personal characteristics can mark someone out as dierent.

It can be thought o in terms o social participation: being disabled in the eyes o others caneectively disqualiy someone rom being recognised as ully part o society. In short,

stigma reers to negative attitudes toward people, regardless o the reality o their condition.

The stigma attached to disabled people can be widespread and acute, and is ar rom

limited to ethnic minority communities. Yet we ound in our ocus groups that many people

in BME communities elt it was a particular problem or them.

Asian people with mental health needs, or instance, reported acing particularly acute

stigma and misunderstanding:

Its diicult within the Asian culture where its seen as such a hidden issue oh mentalhealth. Whereas in other cultures you can be seen to get better over time, here people

dont know its a big thing.


26/4326

Partly this is about lack o knowledge not knowing that many people experience these

issues and that they can recover; misunderstanding the eect mental health issues can

have on peoples lives. But there was also a sense that there can be a dierent basis or

knowledge about impairment. Whereas this person saw that in other cultures you can be

seen to get better, the implication is that in her community mental health issues were eithersomething you had or didnt have. This sense o impairment being absolute partly explains

some aspects o why disabled people are discredited in BME communities disability

comes to deine social relationships in a way that can be diicult to transcend.

There was a widespread sense that in some cases the stigma o being disabled can lead to

people being invisible. One man spoke about this in terms o the level o care he received

at dierent stages o his condition:

Everyone who tries to go to the community [or support] it is really really rustrating and

depressing or the person who is actually suering there is nobody there to listen.

Anything happens they just count as nowt When you end up in hospital they run around

like headless chickens, but when thats inished they disappear again.

For him, the stigma o disability had a serious eect on the consistency o care which he

received he elt that only when something seriously went wrong was he oered help; then

the community disappears again. Care was only provided when absolutely necessary.

Other people told us about how stigma can also aect those associated with disabled

people, as well as disabled people themselves. One social worker we spoke to, or

instance, told us about how some amilies didnt want home visits as they were araid o

their neighbours noticing that they were receiving help. She explained this partly in terms opride, and an unwillingness to be seen receiving help the stigma o being unable to cope.

Yet she was also optimistic about her role and that o other service proessionals in

using their visibility to help reduce some o the stigma o being disabled, or having a

disabled relative. She spoke at length about how street by street she was able to make

in-roads into communities, improving attitudes towards disabled people simply by

demonstrably oering help. The imperative to get BME disabled people into services was

heightened or her by the potential to improve their visibility and status in all communities.

Case study 2: AnwarAnwar is a young man with complex physical needs and learning diiculties. For several

years, he lived alone in an unadapted lat above his amilys corner shop. He had no

wheelchair and no way o getting down the stairs independently. His only contact was

with his amily. Although they visited regularly, i he wanted to leave the house he had

to be carried down the stairs on his brothers shoulders.

It wasnt until a neighbour told them about a local support group that Anwars

circumstances changed. The support worker ensured he was allocated a social services

care package, was given a wheelchair, and was eventually re-housed in an accessible

ground loor lat where he is able to live independently, and has developed goodrelationships with his neighbours.


27/4327

4.3 Social isolaion and family life

Sometimes in our community youre not able to talk about these things, youre more likely

to keep them inside Social isolation is widespread or BME disabled people.

Migrants oten live in poverty, lack inormation and have diiculty building social networks

Womens experience o being disabled can be compounded by expectations about

domestic labour

Becoming a carer can impact on peoples relationships, inances and wellbeing

In contrast with other authors, we ound little to suggest that BME disabled peoples

relationships with their extended amily means they need less external support

By highlighting social isolation as an issue our intention is not to deny the rich and varied

community lie many BME disabled people have. BME disabled people are involved in

setting up mutual support groups, attend social events and training, and participate widely

in social and cultural lie. But it would be inaccurate and misleading to ignore the

widespread concerns reported in our ocus groups, where many people spoke about having

diiculties trying to build lasting relationships, or simply in getting out o the house.

As one support worker told us:

It surprises us how many people are living on their own and having to manage on theirown. Its a conidence thing, and it can stop them getting out and inding support.

It was clear rom the ocus groups, however, that social isolation aects some disabled

people more than others. Women, or instance, were particularly prone to eeling isolated.

Many elt that having an impairment compounded the isolating eects o their household

and childcare roles, and that other amily members rarely made adjustments to support

the management o their condition:

Its all on top o them [women]! Its too much. Too much to take on as a mother and

a daughter and a wie. Its housework, its everything really.

There was a sense that the particular expectations placed on women reduce the emotional

and material resources they have available to cope with their own impairment. Such

draining eects were seen as something that could hold people back rom leaving the

house, let alone being able to ind and utilise services.

Carers o disabled people also told us about similar problems with social isolation in their

communities. For instance, many had insuicient support networks to withstand the

inancial and emotional shock o suddenly needing to care or relatives or riends. One man

we spoke to described divorcing his wie as a direct consequence o arguments theyd had

about who would provide care or their daughter, ater she had been diagnosed with CP.

Another older man reported having had to leave a job he had held or over 20 years in

order to care or his elderly parents, ater both ell ill. Many carers spoke about depression

as a serious and lasting consequence, oten derived rom the social isolation caused by

having to provide care:


28/4328

I let my job, thinking I would have more time to look ater my parents. Theyre my

parents, its my duty to look ater them, but nothing goes beyond, it was not to be.

More responsibility poured on me. Im on the verge o depression.

Given that women are statistically more likely to be providers o care, particularly in ethnicminority communities, the experience o social isolation is likely to be complex and

compounding.

Finally, there is some evidence to suggest that exclusion rom social networks is particularly

acute in Muslim and Hindu communities. It has been suggested that here religion serves as

a way o explaining disability, which can be linked to past sin. As such, disabled people

may be excluded or at least, not included in religious practices as well as through the

physical inaccessibility o religious spaces. Given the importance o religion as a ramework

or sociability in some BME communities, isolation rom religious networks can oten mean

social isolation in general. It is important to mention however that some people did speak o

inding comort in religious community.

The widespread reported experience o social isolation also runs contrary to a clearly

expressed idea in the services literature: that BME disabled people preer to rely on their

extended amily to provide care, and that this causes them to want less external support.

For instance, Salway et al (2007) argue that in ethnic minority communities the immediate

amily is the primary resource or managing the impact o long-term ill-health. Vernon

(2003) argues that interdependence is a key part o Asian communities, and stresses the

importance o reciprocal ties and closeness within the amily.

However, we ound the picture to be ar more complex, or the ollowing reasons:

The importance o amily care provision may result less rom cultural preerences than rom

mistrust, ear or a lack o aith in mainstream services. Relying on amily care is a symptom

as much as a cause o the under-use o services.32

The capacity o amilies to provide care diers dramatically. There is as much variation in

amily composition within ethnic groups as between them not all amilies are able to

provide care. Further, impairments luctuate over time, and the sudden onset o the need or

care can have dramatic impacts on the inancial and psychological stability o amilies.

Over-protection can be a problem or young BME disabled people. The desire to liveindependently can be a source o conlict between young people and their relatives, who

may be reluctant to allow young people space to explore their own identities.33

Family can also be a primary source o stigma (see Case Study 3). We ound cases where

the most acute source o discrimination was rom amily members themselves. One woman

we spoke to told us about her riend who had lots o problems with her mother in law, and

that has also aected how her amily have been with her because o her disability, its like a

vicious circle.

Some o our respondents also elt that the erroneous assumption about amilies providing

care also prevented statutory services in particular rom oering the ull range o services.

As some o our respondents put it:

32 Begum, N. (2006) Doing It For Themselves: Participation and Black and Minority Ethnic Service Users, London: SCIE and Race Equality Unit33 Vernon, 2002


29/4329

When we go and ask or extra support they say no, you can do it yoursel, and its because

youre rom an Asian background so they think youve got a close amily, an extended amily

who can look ater them, and religious leaders. And thats an excuse or [social services]

not to do what theyre supposed to.

Social services kept saying what about your relatives, have you not got someone else to

help look ater your parents? And I say that its irrelevant whether Ive got riends or amily

what are you going to do!

In short, some amilies provide care and support or disabled people, but this cannot be

relied upon, and is not always the best solution or the disabled person. Whatever each

amilys particular situation, other orms o support are still likely to be needed.

Case study 3: Rubina

For Rubina, a Muslim woman, the diagnosis o her sons autism aged 13 had been a relie.Prior to the diagnosis she had elt constantly obliged to deend hersel against her amilys

judgement o Farooq as just a naughty boy. The diagnosis o autism gave her an

explanation or his behaviour that didnt relate to her own parenting ability.

The eect o her amilys exclusion o Farooq had been severe as a mother who didnt

work, extended amily provided a primary orum o social lie. Here, social isolation was

in spite o having a strong extended amily.

She described the eeling ater diagnosis:

I know that Im not on my own anymore, this autism is not only or my son, theres otherpeople got the same thing. So beore, when I was so isolated, I thought why is everything

just happening to me, but now I know theres so much illnesses out there, theres so many

illness, so many names and so many types, so youre not only on your own.

A urther implication o Rubinas story is that the medical terminology is sometimes

welcomed as it provides a weapon against cultural misunderstanding. It is vital to try and

improve attitudes toward disabled people in BME communities.

4.4 Migraion

Recent migrants have particular sets o needs

The need or better care can impact on migration decisions

Residency status has a serious impact on access to statutory services

Being disabled can limit peoples ability to migrate

I was in London just on my own, and I was crying, crying all the time

In many ways we still know too little about the links between disability and migration, buteven the ew stories we heard during our research indicated that there are issues particular

to migrant communities that require greater evidence and action.


30/4330

For disabled asylum seekers, the impact o legal status is huge until a person is granted

leave to remain they have no access to income support or housing beneits. We heard

stories o disabled asylum seekers who were living on around 60 a ortnight, donated

by riends and amily. It hardly needs saying how diicult living on this level o income

is or anyone, but or disabled people whose needs are recognisably greater the problemis signiicant.

With poverty comes social isolation, and we heard requent reports o loneliness being

compounded by the strangeness o a new country. One mother to a disabled child, who

had been an asylum seeker, told us that when she irst arrived:

I was crying a lot, and in this country one o the things I notice is that you can be crying

rom morning until evening and at the end o the day you still inish on your own, no-one

will knock on your door and say oh what is wrong, what is it.

For her there was a complex, double aspect to her new situation: the emotional stress otrying to understand her daughters condition (which was only diagnosed on arrival in the

UK), and doing so in the absence o strong or stable support networks. In turn, this lack

o support was something she was struggling to understand the strangeness o being

in a new country was bound up with the diiculties o caring or her disabled child.

We also ound that the need or care can contribute to the decision to migrate or return

migrate, something which echoes other research indings looking at retirement decisions or

BME older people (see case study 4).34 The impact o disability on migration decisions isnt

simple, and the luidity and complexity o migration patterns as a whole has to be taken into

account. Evidence we ound, however, suggests that disability can restrict return migrationor older people; prevent young 2nd generation migrants visiting their parents country o

birth; can lead people to stay in countries with better care; and limits geographical mobility.

Despite this complexity, the point remains: being a migrant aects the experience o being

disabled, but being disabled also alters the experience o migration.

Case study 4: Remi

Remi came to the UK initially on a student visa, studied or a year, then returned home

to Nigeria. Later on she had two daughters, one o whom began to all ill aged our.

Remi went to the paediatrician in Nigeria and repeatedly tried to describe the symptomsshe was seeing in her daughter, only to be told that what she was noticing was just the

anxieties o a mother.

Her daughter grew progressively more ill, began to have convulsions, and inally ell into

a coma or around two weeks. Although the Nigerian doctors managed to bring her out

o the coma, they were still unable to diagnose her condition.

Remi moved to England, where Doctors immediately diagnosed her daughters condition

as viral encephalitis and began to treat her accordingly.

34 Khan and Mawhinney, 2011


31/4331

4.5 Discriminaion

We ound little evidence o direct racism in service provision and encountered no reports

o sta being explicitly discriminatory. We did ind evidence o discrimination on the grounds o disability

Understood as a gap between what services are expected to provide and what BME

disabled people report experiencing however, indirect discrimination was reported by

a number o respondents

Consistent low-level discrimination can have a serious impact on peoples wellbeing

Non-discriminatory practice is about more than accommodating cultural preerences

The concept o discrimination is complex. Bradby argues that it is inaccurate and unhelpulto suggest that poorer outcomes or BME people overall can necessarily be considered

racist per se.35 She argues that there is a lack o clarity about whether discrimination is an

organisational or individual ailure, and as such how we should respond to its presence.

However, it would be nave to discount discrimination altogether as a actor in BME disabled

peoples lives. Understood as a gap between the care received by BME people and the

care they should expect to receive, we ound a number o examples o discrimination.

Examples o this are as varied as or all disabled people, and we were told numerous

stories about people with visual impairments being ignored at bus-stops; unair dismissal

rom employment; bullying by school-children; or being denied access to preerred

educational courses. Disability was widely reported as a source o discrimination.

The links between discrimination on grounds o disability and ethnicity, however, are

perhaps more diicult to pinpoint, although our interviewees were in no doubt that they

existed, reerring to it as like a double bind.

One set o examples where the relationship between culture, disability and discrimination

was explicit included complaints about social workers repeatedly ailing to adapt their

working practices to peoples preerences. One woman in Bradord told us o her struggle

to get social workers to remove their shoes in her house:When we irst had carers we had an issue because when they used to come into the

house they didnt want to take their shoes o, and this was something that we said to them,

well, thats something we ask everyone to do. And theyve come in and they say, well were

not doing it, so I said well you cant come in then!

Her story is less about the lack o understanding per se than the repeated ailure o social

workers to adjust their working practices. This was a theme repeated again and again the

key source o rustration was inconsistency and poor communication, not oence at people

getting things wrong:

35 Bradby, H. (2010), Institutional Racism in Mental Health Services: The consequences o compromised conceptualisation, Sociological Research Online,15(3)


32/4332

My social worker was always cancelling at the last minute and it was like a let down

on me theres no reason I wasnt important.

One conversation we had with two young people in Bradord provides a helpul illustration.

The two people were debating whether they preerred a male or emale support worker.For the young man, having a emale worker really mattered: I wanted a lady support

worker I dont want a man, because a man when you talk to a man they dont understand,

they laugh you o. For the young woman, however: It depends on the person, the

personality. I they want to help then a man can help.

Two points are revealing about the young womans comment irstly, she is a Muslim

woman, who are oten assumed to want only emale care; something clearly not an issue

or her. Secondly, the emphasis on personality and desire to help mattered ar more than

the gender/ethnic proile o the support worker.

Discrimination in these contexts was about the ailure to adapt working practices to culturalpreerences. Yet we recognise the diiculties o working in a context where cultural

preerences are ar rom universal, hence the importance o asking and listening to people

and respecting their requests.

4.6 Conclusion

The point o this discussion and o the chapter as a whole has not been to diminish the

importance o understanding peoples cultural preerences, but to argue against a reductive

understanding o how culture operates in peoples lives. There has been an understandingpresent in much o the literature on service provision that views culture as something ixed,

easily deined, and which cant be transgressed without causing oence.

Yet our evidence clearly shows that people are relexive about culture aware,

knowledgeable and capable o thinking beyond obvious sets o prescribed values. As such,

accommodating culture into services is about more than developing ever-more prescriptive

lists o dos and donts; it is about shiting towards a responsive, listening ethic o care.

Cultural training by itsel will never change a system suiciently to suit all Muslim people

(or instance), or all Aro-Caribbean people, or all Somali people, or the simple reason that

those cultures are diicult to deine even or people who consider themselves to belong

within them. Only by creating a system where the interaction between user and provider is

more responsive to individual versions o culture can services become ully inclusive.

This point should also be read as an underlying principle o the next chapter, which outlines

more explicitly our model or inclusive services.


33/4333

Chaper 5: Recommendaions for services: he Plao model

In the preceding chapters o this report, we have shown that BME disabled people have

substantial unmet needs, and that there are a number o themes common to theirexperience o exclusion rom services. To summarise the key indings o the literature

review, statistical proile and ocus groups, we have strongly argued that:

BME disabled peoples needs are the same as or all disabled people, but the extent and

severity o their unmet needs is greater;

As a large, growing and substantially disadvantaged group there is a critical need to create

more inclusive services or BME disabled people;

Services are not yet ully inclusive or disabled people rom ethnic minority backgrounds,

and BME disabled people report poor experiences o accessing statutory and

voluntary services;

BME disabled people reported poor experiences o accessing statutory and

voluntary services.

These key points inorm this chapter, which returns to our opening question: what should

services look like to ully include BME disabled people?

To answer this question we have developed the Plato model o service provision, which

aims to inorm the production o an inclusive services environment. There are ive key

principles to our model, which argues that services should be:

Person-centred principles

Local community action

Advocacy

Translated communication

Outreach into communities.

This chapter deals with each o these points in turn.

5.1: Services should be: person-cenred

As our primary research has shown, BME disabled peoples needs, preerences and

experiences o services are as diverse as or all disabled people. As such, the ocus

o service provision should be on enabling individuals to live the lives they wish to, rather

than trying to incorporate generalised notions o cultural preerence.

It is telling that one o the most requent complaints we heard in ocus groups was about

people not knowing who their social worker is, or i the social worker had been changed.

This implies a wider point: many people conceptualised the beneits o service provision

not as organisations or corporate bodies but as personal relationships:


34/4334

I cant talk about my lie to anybody, but its more comortable and more reassuring to talk

to somebody who understands where youre coming rom. Beore, I didnt know who to talk

to, where to go, how to talk, but X and Y36 have been showing me ways o talking and

getting things done and that was so much help.

There are also links here with the idea o outreach sometimes the most successul way

to reach isolated individuals is through building personal relationships with individuals.

In this sense, being person-centred means re-conceptualising what it means to think

about the interaction between an organisation and an individual.

Being person-centred also ties into our concerns about building inclusivity around the idea

o accommodating cultural preerence. Rather than trying to turn cultural awareness into

a kind o systemic knowledge, where a set o dos and donts are built into rameworks or

working practice, we urge the development o a culture o listening.

Fundamentally, this is about breaking the assumption that there can be a service whichis appropriate or all disabled people rom a particular ethnic group. We ound that cultural

barriers were ar rom universal in the communities we spoke to; and, where they do exist,

they tend to be realised in quite speciic ways, such as through requesting support in a

particular language, or asking someone to take their shoes o.

Finally, being person-centred lies at the heart o our eiciency argument: Simply put, it is ar

less eective to try and design a one-size-its all system. Placing the disabled person at the

centre o working practice means money is targeted to those areas o each individuals lie

which make the most dierence to them, and which has the best chance o improving

their lie.

The lives o BME disabled people are oten characterised by broad structural disadvantage.

Resolving this disadvantage, however, can only succeed by targeted interventions based

on peoples individual circumstances.

Good practice case study: Bradnet

Bradnet is a user-led organisation oering a range o services in the Bradord area,

such as:

person-centred outreach and advocacy

one-to-one support and welare rights advice

help in education and employment

an Independent Living Service providing personalised care assistance.

Being person-centred is a central part o Bradnets organisational purpose, and a large

part o their advocacy and outreach is about being led by the disabled person as to what

support is most needed. Rather than beginning rom an assumption about what support

disabled people would like, Bradnets approach is to assess what individual needs are,

and help direct people towards those ends:

I I need help with paperwork, or getting a grant, or anything like that you know

theyre there.

36 X and Y are Scope Response workers


35/4335

Part o their success comes rom recognising the limits o what they are able to provide,

and working closely with other organisations to provide joined up care and support.

Rather than trying to oer everything, Bradnet has close links with other local voluntary

and statutory services, and have a successul history o reerring service-users to more

appropriate bodies, and supporting them to access these.

5.2: Services should be: local

As discussed under the discrimination section o chapter 4, many people spoke about the

need to make services more embedded in the community. One clear way o achieving this

is to deliver services at a more local level.

The beneits o operating at a local level include: knowing the geography o local

communities; building links with other local organisations in order to manage successul

reerrals; knowing GPs and community nurses; knowing teachers, shopkeepers, religious

leaders; being able to build long-term and stable relationships; expanding organisational

reach through word o mouth.

Building services rom the community upward is a way o being more intelligent about links

between organisations, in terms o knowing what organisations are available to reer

individuals to, and having personal contacts to acilitate reerrals more successully.

The value o knowing the social geography o a particular community is diicult

to overestimate.

Being local is also about a service being identiiably or a particular community. Partly thisis about simple location: being able to easily access a service is clearly important or

disabled people. But it is also about the more abstract identity o a service; being obviously

open to people rom a variety o backgrounds through inclusive messaging and branding,

or instance. Again individual relationships are important inormation clearly spreads most

eectively through word o mouth.

5.3 Services should include: advocacy

Advocacy reers to the process o supporting vulnerable service users to speak on theirown behal, in order to ully access the services to which they are entitled. Providing such

support is a key way o overcoming the communication barriers we outlined in chapter 4.

There are many dierent ways o supporting a partner through advocacy, but there remain

two key principles: supporting people to reach empowered decisions; and assisting people

to express their views and be listened to by those who are important in their live

BME Full Report

Documents

Transcript of BME Full Report