Proposal to the London Development Agency

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Proposal to the London Development Agency Powered By Docstoc
					Full report



Research and development of resource tools to address the needs of
disabled black, minority ethnic, and refugee people accessing services
and support in London



Produced by Skyers-Poorman Research and Consulting on behalf of
Inclusion London



Edited by Katharine Quarmby



March 2011
2
Acknowledgements



We would like to thank all of the staff at Inclusion London, particularly
Andrew Little, the Chief Executive and Anne Kane, the Policy Manager.
Inclusion London provided expert guidance and input at all stages of the
report, including writing, editing and drawing up recommendations.

We would also like to thank all of the many organisations, sadly too
numerous to mention individually, which supported the research and
participated in it.

Finally, we would like to thank Hashmukh Pankhania, Chief Executive of
the Council for Ethnic Minority Voluntary Sector Organisations, Claire
Wise, London Accessible Housing Register Co-ordinator at the Royal
Borough of Kensington and Chelsea, Tracey Proudlock, Director of
Proudlock Associates, and Helen Hibberd, Centre Co-ordinator,
Hackney Migrant Centre for allowing us to attend consultative sessions
with the voluntary and community sector. The fieldwork proceeded
smoothly as a result – thank you.




                                                                        3
Contents                                             Page



Acknowledgements                                     3

Introduction                                         5

Section One – Signposting the report                 7

Section Two – The social and legislative context     16

Section Three- BMER groups and access to services    40

Section Four - From policy to action                 69

Key research outcomes                                72

Section Five – Key survey findings                   75

Section Six – Conclusion and recommendations         95



Appendix A: Further Reading                          103

Appendix B: Research Methodology                     106

Appendix C: Survey questions                         108

Appendix D: Topic guide for provider organisations   112




                                                            4
Introduction

Aims and objectives of the research

1.1 In January 2010, Skyers-Poorman Research and Consulting was
appointed by Inclusion London to undertake a research and
development project to:

       Research, using quantitative and qualitative methods, the profile of
        disabled black, minority ethnic and refugee (BMER) communities,
        and barriers to the take up of services;

       Produce a map of frontline organisations that assist people from
        the target communities in accessing services;

       Identify best practice and also key problems of frontline
        organisations, and of borough service delivery organisations;

       Develop and deliver a Good Practice Guide that will aid frontline
        organisations in providing services that can be more easily
        accessed by BMER communities.



1.2 There is a paucity of reliable research data on the experiences of
disabled black, minority ethnic, and refugee (BMER) people in London.1

As well as the lack of data, existing policy and practice rarely focuses on
the particular needs of disabled people who are also from minority ethnic
backgrounds or who are refugees or asylum seekers. The
interconnections between these groups are rarely acknowledged and
there are few services. This has resulted in a collective failure to meet
the needs of some of the most socially excluded groups living in London.

The research examines the experiences of disabled BMER communities
in relation to health, social care, transport and welfare benefits at a time
of great concern about cuts to services and welfare benefits arising from
recent government policy.


1
    We have adopted a social model of disability, which is explained on page 11.
                                                                                   5
1.3   A key part of the research was obtaining quantitative data on:

   Services provided by voluntary sector organisations representing
    disabled BMER Londoners;

   Barriers experienced by organisations in providing services to
    these communities;

   Barriers to accessing services experienced by disabled BMER
    Londoners;

   Views of organisations on the kind of resources that would be
    valuable in the delivery of their services.




                                                                       6
Signposting the report

1.4 The report is organised as follows: the remainder of Section One
explores the definitions employed in the research in relation to the
BMER categories, discusses what is meant by the terms ‘refugee’ and
‘asylum seeker’, and examines what implications such definitions have
for the research project. We also discuss the definition of the ‘social
model’ of disability, which we have adopted in this report, as well as
discussing the ‘cultural model’ of Deafness. We then look what
implications these definitions have for disabled people from BMER
backgrounds, as well as their experiences of discrimination and access
to services.

The section concludes with an exploration of some of the key challenges
in relation to data collection on the needs of BMER groups. We stress
the importance of a credible evidence base that could inform public
policy about the needs of disabled BMER Londoners.



1.5 Section Two examines the social and legislative context in which
the research is situated, as policy is evolving fast at the moment. It also
examines the key debates that have relevance to this project, including
multiculturalism, citizenship and community cohesion. Finally, Section
Two explores issues around the funding of the voluntary and community
sector. We conclude by looking at how resourcing issues have become
enmeshed with a larger debate about community cohesion and a
hierarchy of need.



1.6 Section Three sets out the national and regional policy context,
and discusses some of the key literature in relation to the policy areas
that are the focus of the research, (health, adult social care, welfare
benefits and transport). The literature review is then summarised.

1.7 Section Four summarises the actions arising from a review of
policy.
                                                                           7
1.8 Section Five is a quantitative analysis of a survey conducted on
experiences about access to services among disabled BMER groups
and the experiences of voluntary organisations providing services to
them. The analysis is illustrated by excerpts from interviews with those
providing services at borough level.

1.9 Section Six draws together the key themes arising from the
research and sets out a series of recommendations that could improve
access to services for disabled BMER groups.




                                                                           8
The definitions of equality employed in the report

1.10 The terminology in relation to equality and diversity is constantly
changing as new groups appear and communities evolve. Precise
classification is, therefore, impossible. However, this research has
focussed on particular groups as detailed below.

BMER categories that are the focus of this research

1.11 Throughout the research we have focused on specific groups
within the BMER category; Black, Asian, and Chinese people.2 The
approach we have adopted in the research attempts to mirror the
contours of the current debate about disability, impairment, race and
ethnicity. This has shifted from a one dimensional view that has tended
to place the experiences of equality groups within separate uniform
categories, towards a comprehensive approach which recognises the
diversity of disabled people’s experiences.

1.12 Identities are, of course, fluid, and the experiences of disabled
BMER Londoners are varied, with different groups expressing different
concerns. Groups can experience discrimination for a number of
different reasons. However, it is true to say that disabled BMER
Londoners face multiple barriers to equality in a number of key areas,
including education, employment, health and transport. Thus, whilst we
have separated out impairment and race analytically for the purpose of
this research, the centrepiece of our approach is based on a clear
understanding that people can experience discrimination for a variety of
reasons.3




2
  We have employed the term BMER throughout but we draw the attention of readers to
terminology deployed by other researchers we cite, such as ‘BME,’ or ‘BAME’.
3
  We also acknowledge discrimination based on age, gender and sexuality. These should be
taken into account if they present significant challenges to the lives of disabled people from
BMER communities.
                                                                                             9
Defining refugees and asylum seekers

1.13 The terms ‘refugee’ and ‘asylum seeker’ are used interchangeably
     in some policy literature and colloquially but they have different
     legal definitions. The two groups are entitled to different levels of
     services and have different rights. An agreed definition is crucial so
     that those providing services can understand who is entitled to
     what service, and to what extent. The Mayor of London’s Refugee
     Integration Strategy offers a valuable working definition of the
     terms refugee and asylum seeker, as the table below illustrates:

                       Refugees and Asylum Seekers

Description              Legal status               Eligibility for benefits
                                                    and services

Refugee: under 1951      Person recognised as       Access to public funds,
UN Convention            requiring asylum           housing, health and
                         because the state          welfare services,
                         believes that they have    education and
                         a ‘well-founded’ fear or   employment. Right to
                         persecution. Since         family reunion after
                         2005, initially for five   five years if Indefinite
                         years. Subject to          Leave to Remain is
                         review by the Border       confirmed.
                         and Immigration
                         Agency.

Humanitarian             Person refused asylum      Access to public funds,
Protection: under        under ‘51 Convention,      housing, health and
European Convention      who cannot be              welfare services,
on Human Rights          returned to country of     education and
                         origin as UK               employment. Right to
                         government accepts         family reunion and
                         that they face a real      settlement after five
                         risk of serious harm.      years if Indefinite
                         Granted for five years     Leave to Remain is
                         but subject to review.     confirmed.

                                                                          10
Discretionary Leave:    Person not deemed          As above but not
often under European    eligible for either 1951   including the right to
Convention on Human     Convention status or       an immediate family
Rights                  Humanitarian               reunion. Can apply for
                        Protection, but            a further three years
                        permitted to stay on       and for settlement
                        grounds of, for            after six years.
                        example, family links
                        or a medical condition.
                        Usually granted for an
                        initial period of three
                        years.

Asylum Seeker           Someone who has            No right to public funds
                        applied to the UK          except through Border
                        Government for             Agency and
                        recognition as a           Immigration Agency
                        refugee (usually under     Asylum Support
                        1951 Convention or         regime. No right to
                        under human rights         take paid work unless
                        laws) and is awaiting a    decision takes over a
                        decision, including        year. Access to
                        those appealing            healthcare and some
                        against an initial         education and training.
                        refusal.



A social model of disability and cultural model of Deafness

1.14 The research adopted a social model of disability. The social
model of disability acknowledges that poverty, disadvantage and social
exclusion experienced by many disabled people is not the inevitable
result of an impairment, but rather stems from attitudinal and
environmental barriers.




                                                                         11
1.15 The research also had regard to the cultural model of Deafness
which Inclusion London supports. This model recognises that many Deaf
people (particularly, but not exclusively, Sign Language Users), see
themselves as a linguistic minority. This is whether or not they also see
themselves as disabled people. Thus, Deaf is as a way of describing a
specific and positive culture - embracing sign language, lifestyle, history
and identity – shared by Deaf people.

We also recognise that many deaf people from BMER communities face
additional structural barriers that inhibit access to services and their
participation in society

1.16 This model also presents researchers with methodological
challenges. These are detailed in Appendix A, which contains a
methodological statement on these issues, especially around the lack of
disaggregated data for Deaf people. Furthermore, research in relation to
Deaf people from BMER communities shows that many are
marginalised, not least because there is limited provision of sign
language interpreters. Therefore we have included Deaf people within
the category of disability in this report, as most data aggregates the two
groups. Where data is disaggregated we have used it accordingly.

1.17 This report does not view disabled people as a single,
homogeneous group. BMER communities may share certain
experiences with other disabled people in the general population. Within
this broad constituency however, they are more likely to experience
even greater inequalities, and be subject to multiple levels of
discrimination on the grounds of race, ethnicity, migration, as well as
age, gender, religion, and sexuality.4 The underlying drivers necessary
to understand the experiences of disabled BMER people are complex,
as they are also shaped by factors such as the type of impairment,
geographical location and class.




4
  Yasmin Hussain, Karl Atkin and Waqar Ahmad, South Asian young disabled people and
their families, (Joseph Rowntree Foundation, 2002)
                                                                                      12
1.18 As already highlighted, the tendency to conflate the terms ‘refugee’
and ‘asylum seeker’ can create difficulties for organisations that deliver
services and for individual clients, because of the complexity of benefits
entitlement in this area.

1.19 Some research evidence shows that disabled BMER individuals
may not choose to define themselves as disabled. This stems from
negative images of disability within individual communities, as well as
experiences of disablism and racism.5

The social model of disability and the cultural model of Deafness seek to
positively reframe the debate around disability. This report hopes to
provide Inclusion London with a better understanding of the experiences
of Deaf and disabled BMER groups and how their experiences fit within
both the social and cultural models described above.

Mind the gap: data deficit and data control

1.20 There are a number of challenges in relation to data about
disabled people. This include differences in the way in which disability or
impairment is defined by different organisations, small sample sizes
which do not allow for the examination of difference across populations,
and difficulties distinguishing impairment from chronic illness or long-
term health conditions.6 As already demonstrated, definitions of race and
ethnicity are similarly varied. This creates similar challenges in that data-
set.7 The existing research with disabled people from BMER
communities suggests that they experience multiple and simultaneous
sources of disadvantage and discrimination, and are less likely to gain
access to and receive services that support them.8


5
 Nasreen Ali, Karl Atkin, Gary Craig, Abena Dadze-Arthur, Charmaine Elliot, Angela
Edwards, Ethnicity, disability and work, (Royal National Institute of Blind People, 2006)
6
 Kingsley Purdam, Reza Afkhami, Wendy Olsen and Patricia Thornton, ‘Disability in the UK,
Measuring Equality’, Disability & Society, 53:65, 2008
7
 Sarah Salway, Lucinda Platt, Kaveri Harriss and Punita Chowbey, ‘Long-term health
conditions and Disability Living Allowance: Exploring ethnic differences and similarities in
access’, Sociology of Health and Illness, 29,6,2007, pp907-930 et al,
8
 The evidence is reviewed by Aru Narayanasamy in ‘Transcultural Mental Health Nursing.
2: Race, Ethnicity and Culture’, British Journal of Nursing, 8, 11, 1999, pp664-668
                                                                                               13
1.21 Access to data is inextricably linked to policies on access to
services. When evidence is lacking, it is easy to make ill-informed
assumptions about the needs and aspirations of disabled BMER
communities. Furthermore, evidence about some communities that are
more established is more readily available than evidence about needs
within new and emerging communities, for example, migrants and
refugees and communities of religion and/or belief. This presents a
policy challenge that needs to be taken seriously, as lack of data as well
as poor data sets can undermine and weaken frontline delivery services,
leaving those who are most vulnerable at risk.

1.22 Local public bodies produce data drawn from multiple data sets for
which there are a multitude of approaches and standards for collection,
recording and reporting. The extent to which this information is used
well depends on the skills of those involved in analysing and interpreting
the information, asking the right questions, and making evidence-based
policy decisions.

1.22 Good data analysis can increase confidence in the way services
are planned and delivered. It could, for instance, be used to empower
disabled BMER Londoners, by informing the so-called “personalisation”
of service provision.9 Without accurate data, services will be less
structured around the needs of vulnerable groups, public bodies cannot
be held fully to account, and there is a weaker basis for judging the
delivery of local services. The extent to which data are used effectively
to support government policy on community involvement, participation
and consultation is questionable and there is a propensity towards light
touch monitoring and only occasional intervention. This defeats the
purpose of monitoring if there is no action taken in between monitoring
to address underperformance.




9
  Personalisation is the process of enabling people to be more in control of the services they
receive by knowing what their needs are and having full control over how those needs are
met. Independent living is one of the key aims of personalisation and the provision of
personalised support and tailored support packages are centred on enabling people to have
control over the services they need to ensure that services are built around the needs of
people rather than having to fit with existing services that are not person-centred
                                                                                            14
Furthermore, penalties for failing to meet equality standards set by The
Equality Standard for Local Government, Employers’ Organisation of
Local Government, 2001 (in conjunction with CRE, EOC, DRC and the
LGA) are also rarely imposed.10

1.23 The consequences of poor data collection can be serious.
Detailed data, for example, is collected about BMER groups in relation to
crime and immigration; the Home Office collects detailed data on the
numbers of BMER communities in London and other regions, and
monitoring data is gathered through the Prevent Extremism Fund with a
stated aim of encouraging community cohesion and community
engagement. But the emphasis on such data collection can fuel
prejudice and paint a distorted picture of the community. It can also
create distrust in the community being scrutinised. The work of other
groups, therefore, such as the National Audit Office, the Care Quality
Commission and the UK Statistics Authority are critical to promoting new
and consistent ways of collecting data on the needs of disabled BMER
communities and providing guidelines on how it should be used.

1.24 The campaign for better data collection is also in evidence at a
global level. It is a central plank of the World Health Organisation’s
Strategy and action plan on Disability and Rehabilitation 2006 – 2011.
The action plan calls on government organisations, development
organisations, the private sector and the media to raise their awareness
of the barriers experienced by disabled people who wish to gain access
to services. The World Health Organisation (WHO) has made a
commitment to address the current data deficit by creating a website on
different impairments and rehabilitation and developing and
disseminating advocacy materials. Its Measurements and Health
Information Systems Department will soon start collecting disability-
related data. The body has also made a commitment to supporting the
collection of country-level data on disability and the implementation of
the United Nations Standard Rules related to health, rehabilitation and
support services. Similar pledges have been made by the United
Nations Statistics Division and the Washington Group on Disability
Statistics.
10
     Nothing but the truth – a discussion paper, (Audit Commission, 2009)
                                                                            15
Section Two: The social and legislative context

2.1 The London region is currently experiencing a number of social
and economic challenges. These relate to the global economic
downturn, the scale and complexity of which has been compared to the
1930’s Depression.11

The challenges which arise from the recession have particularly adverse
effects on disadvantaged groups. However, even in times of positive
economic growth, those groups, particularly their disabled members,
continue to face profound challenges.

In the UK as a whole, around 11 million adults, or 24% of the total UK
adult population are thought to have impairments, and there are around
770,000 disabled children in the UK (some 7% of all children).12 In the
London Region, 16% of London’s working age population or 800,000
people are disabled.13 Disabled graduates in London are more than one
and a half times as likely to be unemployed as their non-disabled
peers.14 Disabled people are more likely to live on lower incomes than
the general population, and face other problems, such as having
insufficient support, having to fund their own adaptations, and face
higher fuel costs. Many also have to fund a proportion of their social
care.15 Many workplaces remain poorly adapted. Leonard Cheshire
Disability also found in its 2003 survey that 23% of disabled people have
had to reject an offer of employment due to lack of accessible
transport.16




11
  Paul Krugman, The Return of Depression Economics and the Crisis of 2008, (Penguin,
2008)
12
  ‘Improving The Life Chances of Disabled People,’ (Prime Minister’s Strategy Unit, A joint
report with: Department for Work and Pensions, Department of Health, Department for
Education and Skills, Office of the Deputy Prime Minister, 2005)
13
     ‘Data Management and Analysis Group Briefing’, (Greater London Authority, 2005/07)
14
     ‘Disabled students in London’, (Mayor of London 2007)|
15
     ‘Disability Review’, (Leonard Cheshire Disability, 2009)
16
     Ibid.
                                                                                              16
2.2 Disabled people are heterogeneous in terms of social class,
geography, ethnicity, gender, and culture. Meaningful data on their
experiences is essential, given the challenges that so many face.
Without good data it is impossible to design appropriate services,
consistent across the board and accessible to all disabled Londoners.
The data is also confusing; whilst some evidence suggests that BMER
groups are less likely to report having an impairment than the general
population, other evidence suggests that they are more likely to do so.
This may be because younger people are more likely to report
impairment than older disabled BMER Londoners, but the research is far
from definitive.17 What is not in dispute is that BMER Londoners are
more likely to be socially excluded if they have an impairment, partly
because they also experience other forms of discrimination because of
their race and immigration status.




17
     ‘Improving the Life Chances of Disabled People’, (Prime Ministers’ Strategy Unit, 2005)
                                                                                               17
A demographic profile of the London region

2.3 The London region, on which this research is focused, is
comprised of 32 boroughs and the City of London. It has an estimated
population of 7.25 million and is the most populous city and metropolitan
area in the European Union.

The history of London is typical of other major cities; it is one of
continuous migration, creating a very diverse city in terms of race,
religion and sexual orientation. Indeed, it is the most ethnically diverse
region in Europe; over 1500 nations are represented and some 300
languages and dialects are spoken.

London is also diverse in religious terms; although most Londoners are
Christian, around 39% of Londoners are Muslim, and there are also
smaller Sikh and Hindu communities. Some 58% of Muslim Londoners
are of Asian origin but other communities are also represented, including
Somalians and other black Muslim backgrounds Over 53% of all Indians
in London are Hindu. Of the Sikh community, 32% live in London (with
most living in Ealing, where their population numbers around 26,000).

Around 20% of London households have a disabled family member.
According to the Annual Population Survey for 2004, 16.3% of working
age Londoners consider themselves to be disabled and of those who
took part in Disability Capital, 34% said that they faced discrimination on
a regular basis and 43% said that they sometimes experienced
discrimination. A further 61% said that they had used an advocacy
service or an organisation of disabled people to assist them.18

2.4 London is not only a very diverse region, it is also the most
prosperous region in the UK overall. However, when measured at a
much smaller, sub-regional level, it is clear that London is also a very
unequal region and that inequality is on the increase.




18
     Quoted in London Development Agency Equality Evidence Base, 2009
                                                                             18
Gross Value Added (GVA) economic growth and increasing prosperity
are increasing, but have been accompanied, somewhat paradoxically,
by a trend towards social and spatial polarisation.19 This trend is
particularly pronounced among BMER groups. London was home to
nearly two-thirds of the BME population in 2006, compared to 29.1% at
the time of the 2001 Census.20 This trend is expected to continue; based
on current GLA projections, the BME proportion of the general
population is expected to reach 39.1% by 2026, if current trends
continue.21 Disaggregated further, every BME group in London is
projected to increase although that increase is not uniform across each
ethnic category. The Black Caribbean group is projected to increase by
11.5%, compared with projected increases in the Chinese, Pakistani and
Bangladeshi groups of 45.9%, 40.3% and 39.1% respectively. 22

2.5 The total number of citizens over 60 in London is around 1.2
million and there are around 250,000 Londoners over the age of 80.
Projections suggest that the number of residents over 60 will increase by
more than 242,000 in the next 20 years, and over 99.6% of this increase
will be directly attributable to the increase in London’s older BME
population. The BME population is an ageing one, particularly
pronounced in the over 50’s and over-75 groups. As many people
acquire age-related impairments this has significance for service
provision.




19
  GVA is a measure of the contribution of enterprise to an economy and is the difference
between economic output and consumption, see for example www.statistics.gov.uk.
20
  The term BME is used here as we are employing the term used in that official data
collection source.
21
     Data Management and Analysis Group Briefing, (Greater London Authority, 2008)
22
   ‘Equal Life Chances for All Londoners’, Race Equality Scheme, Greater London Authority,
, 2008 - 2012
                                                                                           19
2.6 According to figures from the Home Office, the number of
applications for asylum (excluding dependants) was 4,765 which were
30% lower in the fourth quarter of 2009 compared to the fourth quarter of
2008, when the figure was 6,775.23 The number of applications for
asylum (excluding dependants) was 29% lower in the second quarter of
2010 (4,365) than in the second quarter of 2009 (6,110).24 There are no
official figures on the numbers of refugees living in London, so it is
impossible to estimate the overall size of that population, or indeed to
break it down to a London borough level, or by categories such as
gender, ethnicity and disability.

However, the Greater London Authority’s Refugee Integration Strategy
does provide some estimates. The strategy suggests that the possible
numbers of refugees and asylum seekers who claimed UK asylum
during the period 1991 – 2005 and who were living in London in 2005,
including dependents, totalled around 500,000, accounting for some 6-
7% of the city’s entire population. This proportion includes those with
refugee status or another positive decision on their claim, those with
asylum claims still pending in 2005, and asylum seekers whose claims
had been rejected but who had remained in London. The proportion of
refugees who sought and were granted asylum in this 15 year period are
assumed to make up around half of the total; 250,000 people in 2005,
including dependants, around 3-4% of the region’s resident population.25
This figure also allows for possible net migration to London of people
initially dispersed elsewhere. The Mayor of London has also
commissioned several pieces of research on this as part of ‘London
Enriched’, (the Mayor’s refugee integration strategy), in 2009.




23
     ‘Migration Statistics Quarterly Report’, (Office for National Statistics, February 2010)
24
     ‘Migration Statistics Quarterly Report’ (Office for National Statistics, August 2010)
25
  ‘London Enriched’, Draft Refugee Integration Strategy in London (Mayor of London, July
2007)
                                                                                                20
2.7 London has traditionally been the main destination for international
migrants seeking work or asylum. London had the second largest
population of supported asylum seekers in the UK (5,160) at the end of
2008.26 There are several reasons why asylum seekers favour London.
These include relative proximity to the point of arrival, social and family
networks, a voluntary sector infrastructure and access to lower cost
private rented accommodation.27

2.8 An issue that is of particular relevance to this research into the
needs of disabled BMER groups is a phenomenon known as the
increasing ‘feminisation’ of migration. Traditional studies of migration
and data collection tend to focus on heads of households, who tend to
be male. However, according to the International Labour Organisation,
over half of all international migrants travelling alone are women, a high
proportion of whom come to London. This also has important
implications for the planning and delivery of effective support services
and underlines the importance of understanding the complex needs of
disabled BMER groups.

Environmental pressures due to climate change are also expected to
increase the numbers of migrants. The United Nations has forecast that
some 50 million refugees will be displaced as a result of global
environmental change, dwindling resources, and political instability.
These numbers are expected to treble by 2050; even if London is only a
destination for a small minority of these refugees, the inflow could still be
substantial. This, too, has implications for services.28




26
  ‘An evidence base on migration and integration in London’, ESRC Centre on Migration,
Policy and Society, (University of Oxford, 2009)
27
  ‘An evidence base on migration in London’, ESRC Centre on Migration, Policy and
Society, (University of Oxford, 2010)
28
  ‘An evidence base on migration in London’, ESRC Centre on Migration, Policy and
Society, (University of Oxford, 2010)
                                                                                         21
London regional policies and strategies

2.9 At the London regional level, under the provisions of the Greater
London Authority (GLA) Acts of 1999 and 2007, the Mayor of London
and the GLA’s entire portfolio of duties, policies and procedures must
promote equality of opportunity and sustainability for all Londoners. As
such, all Mayoral strategies and policies are subject to robust equality
impact assessments to ensure that the diverse needs of all Londoners
are fully considered.

There are also a range of regional strategies and policies designed to
address disadvantage on a more general level. At the time of writing a
number of Mayoral strategies and policies with implications for disabled
Londoners were being revised. These include the London Plan, the
Mayor’s Transport Strategy and the Economic Development Strategy.

 The Mayor of London, Boris Johnson, recently revised the GLA’s
approach to equality as it stood between 2000 and 2008. The Mayor’s
‘Equal Life Chances for All Framework’ sets out this new approach.29
The purpose of the framework is to create a fairer society by tackling
barriers to accessing services. It lays down explicit responsibility for
mainstreaming and embedding equality through equality schemes,
including the GLA’s Disability Equality Scheme.30 The framework
accepts the need for an evidence-based approach to policy making and
the need to undertake research into the needs of disadvantaged
communities in London. It sets out a policy intention to ‘produce
informed equality mapping to determine needs and priorities’. This
includes the sectors that are a focus of this research; transport, health
and other key policy areas and we hope that this research provides a
useful contribution to that policy intention.




29
  ‘Equal Life Chances for All Londoners’ – Disability Equality: Greater London Authority
Draft Disability Equality Scheme 2010-2011
30
     The LDA is soon to be disbanded and some of its functions transferred to the GLA.
                                                                                           22
However, the framework has been strongly criticised by disability
equality groups, including Inclusion London, for its failure to include clear
and explicit recognition of the social model of disability and for its
omission of important issues such as disability hate crime.31

 2.10 The GLA’s Disability Equality Scheme’s consultation period ended
in October 2010.32 The general policy aspirations of the GLA’s Disability
Equality Scheme provide a basis to address some of the deep rooted
barriers to services experienced by disabled BMER communities.
However, the scheme does not, the authors of this report believe, go far
enough in examining the impacts of racism and prejudice against
disability on employment, education and other services. The GLA’s Race
Equality Scheme, puts race equality at the centre of all policy making,
strategy formulation, service delivery and employment practice.33 The
Mayor’s Refugee Integration Strategy builds on the work done under the
previous administration, which set out agreed city-wide goals and
actions showing how agencies and communities can work effectively
together to support the integration of refugee communities into the
economic and social fabric of life in London in 2007.34 The strategy
focuses on housing, employment, training and enterprise, health,
community safety, refugee children and young people and community
development.

Its vision for the next few years is to secure the right of refugees to live
in security and dignity, sharing with all Londoners the same chances for
a decent quality of life and the opportunity to contribute to London and to
its development. The strategy marks an important shift in seeking to
remove the artificial distinction between refugees and migrants and to
ensure that the needs of all such groups are met.


31
   See, for example, press coverage at http://www.disabilitynewsservice.com and
http://progressivelondon.org.uk
32
  ‘Equal Life Chances for All Londoners’ – Disability Equality, Greater London Authority
Draft Disability Equality Scheme, 2010 – 2011
33
  ‘Equal Life Chances for All Communities’, Greater London Authority Race Equality
Scheme, 2010 – 2011
34
   http://www.london.gov.uk/who-runs-london/mayor/publications/society/refugee-integration-
strategy
                                                                                           23
The ‘London Enriched Implementation Plan’, which underpins the
Refugee Integration Strategy, provides the basis to hold the Mayor to
account in this area. The London Strategic Migration Partnership and the
Migrant and Refugee Advisory Panel also have important roles to play.35
A priority area for future action is the need to provide high quality data
on refugee needs, including data on health and social outcomes and on
barriers to accessing services.

2.11 It is difficult to ascertain what has been done so far on the Refugee
Integration Strategy Action Plan. This could be due to the restructuring
of the organisation, which led to a high turnover of staff at the Greater
London Assembly and the LDA (which is soon to be disbanded).

However, if the actions outlined below are going to shape the direction
and priorities of London Enriched, they will require significant resources.
Regular updates on the action plan should be made readily available to
the public. This should be accompanied by meaningful opportunities for
disabled BMER groups to have a say on matters that affect them.

London Refugee Economic Action (LORECA) fulfilled that role in the
past, within the London Development Agency. It provided a range of
consultative forums for refugee individuals and organisations, which
could influence the priorities of the Mayor though the development
process for London Enriched, the Mayor's Draft Strategy for Refugee
Integration in London. But LORECA no longer exists. The
comprehensive action points on correcting the lack of data referred to in
this research require leadership and political commitment.




35
     ‘London Enriched Implementation Plan’ (Greater London Authority, December 2009)
                                                                                       24
Action points outlined in London Enriched

Health
Objective: Ensure that refugees’ health needs are met by eliminating
the specific disadvantages they face in obtaining appropriate services
and support
Map information on refugee health Map information.
needs, barriers to accessing             Consult MRAP and practitioners
services and health outcomes             group.
currently held by Health Link            Feed into LSPs via Regional Public
members and work with MRAP and Health
the wider practitioners group to         Group and GOL.
recommend steps to strengthen
the JSNA process for identifying
refugee health needs, barriers to
access and outcomes
Ensure the Mayor’s Health                Facilitate LSMP response to
Inequalities Strategy delivers           consultation on Health Inequalities
relevant commitments for                 Strategy
Refugees                                 Ensure the Health Inequalities
                                         Strategy includes relevant actions
                                         to address refugee health
                                         inequalities.
Improve refugee access to health, Work with PCTs, MHTs, NHS
mental health and social care            London and key providers such as
through information, refugee user the Refugee Council Specialist
engagement and appropriate               Team and other refugee services
procedures and practice                  to improve access, promote
                                         engagement and enhance
                                         procedures/practice, as well as
                                         improving information for
                                         refugees.
                                         Work with LINKs and other bodies
                                         to promote refugee engagement.
Community Development and Participation
Objective: Strengthen the ability of refugees to meet the needs of their
own communities and
engage effectively in civic, political and community life
                                                                               25
Support more effective and          Examine current funding for
sustainable funding of migrant and  migrant and refugee community
refugee community organisations     organisations with specific
through better understanding of     reference to the current economic
their role in integration.          situation, grant-making and
                                    commissioning procedures and
                                    barriers to funding.
                                    Identify migrant and refugee
                                    community organisations (MRCOs)
                                    activities and their contribution to
                                    integration, with particular
                                    reference to LAAs and joint
                                    strategic needs assessments.
                                    Identify action to deliver more
                                    sustainable and effective funding
                                    for MRCO activities that promote
                                    integration.
Bring together migrant              Organise conference or other
and refugee community               process for bringing community
organisations to assess progress    organisations together to assess
and plan action to promote          progress and agree action to
integration through community       promote community
development and engagement.         development. Implement agreed
                                    actions. Report on outcomes of
                                    actions.
Work with key stakeholders to       Map information on refugee
assess the advice needs of refugees advice needs and provision.
and support the development of      Work with partners to identify
appropriate services to meet those steps to expand services, fill gaps
needs.                              and improve quality

Carry out survey on extreme          Convene steering group.
exclusion among asylum seekers,      Develop specification for survey
refused asylum seekers and           that identifies exclusion indicators,
refugees.                            collects relevant data and assesses
                                     extent of and factors contributing
                                     to extreme exclusion.
                                     specification.


                                                                             26
                                     Commission survey and work with
                                     relevant policy makers,
                                     commissioners and service
                                     providers to identify actions to
                                     reduce exclusion.
Promote refugee access to            Review government
volunteering and mentoring           initiatives and funding for
opportunities                        volunteering and mentoring
                                     and identify opportunities
                                     to enhance access for refugees.
                                     2 Work with volunteering and
                                     mentoring delivery partners
                                     to promote access for refugees.
Next Steps
Information
Carry out assessment of existing     Carry out assessment which:
information, establish a baseline,   • maps existing information on
improve information on refugee       core integration themes
needs and identify Key               • identifies indicators of
Performance Indicators for London    integration, including Key
Enriched.                            Performance Indicators for London
                                     Enriched
                                     • establishes baseline
                                     for monitoring implementation of
                                     London Enriched against KPIs
                                     • develops monitoring system for
                                     London Enriched
                                     • identifies steps to improve
                                     information on refugee needs.
Use the results of the baseline      Work with Link bodies to identify
assessment to identify steps for     new information sources.
improving the collection of high     Develop mechanisms for collecting
quality data on refugee needs.       data on priority areas. Support
                                     partners to implement new data
                                     collection mechanisms




                                                                         27
Establish a system for monitoring   Work with link bodies to develop
and evaluating the                  mechanisms for recording
implementation of London            information on indicators.
Enriched and progress against its   Agree responsibilities for recording
key objectives and key              and reporting on indicators.
performance indicators identified   Agree responsibility and process
                                    for collating data and producing
                                    report.
                                    Develop evaluation procedures.


2.12 The London Strategic Migration Partnership, which represents a
wide cross section of sectors, has led more recently in taking forward
these actions. The Partnership has commissioned research as part of
‘London Enriched Action’ (9.3.3), under the theme of Community
Development, to consider the role played by information, advice and
guidance in key aspects of integration. ‘London Enriched’ defines the
challenges of integration in terms of seven core themes: English,
housing, employment, health, children and young people, community
safety and community development. It promotes equal life chances for
all.




                                                                           28
Multiculturalism, citizenship, community cohesion, access to
services and the ‘politics of envy’

2.13 The notions of both equality in service provision and access to
services for BMER disabled people are also linked to broader debates
about immigration, citizenship and rights and entitlements to benefits
and services. These in turn are linked to debates about multiculturalism
and community cohesion.

Policy has, increasingly, advocated a shift away from what has been
termed ‘single group funding’ within the voluntary and community sector.
These broader debates have become somewhat enmeshed in what has
been termed a ‘politics of envy’, manifested in a competition between
‘the have-nots’. In terms of community relations, the ‘politics of envy’ is
seen as resulting in fragmentation between deprived communities and
deprived minority ethnic and religious groups, particularly in areas that
are targeted for a range of compensatory initiatives.36 This framework of
debate, reflecting the government’s plan to reduce overall spending, is
becoming increasingly pronounced.

The authors call here for a new framework, with a realistic baseline of
funding to address inequality and discrimination. As well as cultural and
religious differences, this understanding must also embrace generational
differences within and across cultural groups, differences across the
entire age spectrum, and distinctive cultures, such as that in the Deaf
community. The needs of such groups often go unrecognised in the
current debate on community cohesion. Despite the policy language of
inclusion and “Big Society’, the disconnection of such groups from
mainstream society and access to services has created barriers that are,
all too often, insurmountable.37




36
 Geoff Dench, Kate Gavron and Michael Young, The New East End: Kinship, Race and
Conflict, (Profile Books, 2006)
37
  Skyers-Poorman Research and Consulting, Comparative Policy Analysis, (Greater London
Authority, 2008)
                                                                                   29
2.14 Among the dominant assumptions about BMER groups which
have been popularised by the media is the notion that that they come to
the UK primarily to gain access to welfare benefits, and at the same
time, that they also come to the UK primarily to work.

Thus, by a sleight of hand, BMER groups are seen in the media as being
both ‘benefit dependent’ and, paradoxically, as ‘taking all the jobs’. This
has a negative impact and runs counter to their entitlement to benefits.

Furthermore, a 2008 study in the London Borough of Ealing found that
the complexity of the immigration rules and procedures and the lengthy
checking processes involved, acts as a constraint on employers taking
on refugees and migrant workers.38 There is no evidence that higher
levels of welfare support are associated with higher numbers of asylum
seekers; this is because individuals are usually unaware of the existence
of benefits or do not in any case consider that they will be entitled to
such support. Neither the removal of the right to work in some cases,
nor the reduction in welfare benefits introduced over the past decade are
based on evidence that these factors influence the decisions that asylum
seekers make about where they seek refuge.39

 The dominant narrative on multiculturalism

2.15 The multiculturalism debate has a long history and underpins the
wider debate about diversity, equality, and community cohesion. The
term ‘multiculturalism’ is itself contested; it means different things in
different contexts and to different audiences. It is seen, variously, as
political, social, cultural, or as a combination of these. It is also seen a
vehicle for devising a range of policies that are responsive to cultural
difference.




38
   Sophia Skyers, Migrant Women, Barriers to Employment, (EU Interreg, London Borough
of Ealing, 2008)
39
  Heaven Crawley, Refugee Communities - Chance or Choice? Understanding why asylum
seekers come to the UK, (Refugee Council, 2010)
                                                                                    30
In recent years the term has come under ever closer scrutiny within the
media and among politicians. Policy makers, in turn, have re-thought the
relevance of the term to our understanding of communities defined by
ethnic and cultural difference. There is a tension in the debate between
reconciling and respecting the rights of equality groups at a rhetorical
level, and promoting difference and diversity as desirable and beneficial
at a practical level. This sits alongside the British cultural tradition,
which is often perceived as a fixed and unchanging point. Indeed, a
central pillar of the government’s strategy on multiculturalism and
community cohesion is the promotion of a set of values about what it
means to be British. As an illustration, the former Prime Minister Tony
Blair gave a speech on the matter in 2006, shortly before leaving office,
speaking of ‘equality of respect’ in the context of a multicultural Britain.

At the same time the government effectively separated ethnic groups in
British society into those with either ‘insider’ or ‘outsider’ status by
imposing on minority cultures, ‘a duty to integrate with the mainstream of
society’. Similarly, the former Prime Minister Gordon Brown, speaking at
a Seminar at the Commonwealth emphasised learning about ‘our history
and our culture’, again positing categories of ‘us’ and ‘them’ and making
clear that in reality, only the former owns a credible expression of
cultural values. During the 2010 election debates BMER communities
were again viewed from the perspective of an ‘insider outsider’ binary.
The current Prime Minister David Cameron and the Deputy Prime
Minister, Nick Clegg both spoke at times about the need to limit
immigration; the latter spoke of it being an ‘unreasonable strain on
housing and public service’ and the former of immigration having ‘got out
of control’ and needing to ‘be brought back under control’.40




40
 Sholto Byrnes, ‘Immigration: Cameron, Brown and Clegg all talk of the language of limits,’
New Statesman, (18 April, 2010)
                                                                                         31
2.16 Such statements illustrate how race dominates any discussion
about inequality and limited resources. They also assume that the
adoption of cultural values is a one way process and not part of a two-
way process in which all cultures have something positive to contribute
and around which all communities can unite. This interpretation - which
is in fact a misrepresentation of multiculturalism - often takes place
within the context of discussions about community cohesion and
community tension. In these terms, conflict is seen as arising from
cultural difference and different cultural practices, not from the wider
institutional structures and processes that have negative consequences
for a range of disadvantaged groups. The debate also fails to recognise
diversity between groups and within them, (such as generational
differences within cultural groups, gender and impairment). These are
rarely recognised in the current debate.41

The funding base of the voluntary and community sector

2.17 The funding base of the voluntary and community sector continues
to be a concern for organisations supporting BMER communities,
despite repeated statements from consecutive governments about the
contributions made by the sector. It continues to play a pivotal role in
bringing coherence to the variety of national policy initiatives targeted at
BMER communities, delivers ‘culturally responsive’ and accessible
services and works alongside statutory agencies to recognise unmet
needs. A key recommendation of the ‘Improving the Life Chances of
Disabled People’ report was to introduce user-led organisations in each
locality by 2010.42




41
     Skyers-Poorman Research and Consulting, Comparative Policy Analysis,
(Greater London Authority, 2008)
42
     ‘Improving the Life Chances of Disabled People’, (Prime Ministers’ Strategy Unit, 2005)
                                                                                               32
Similarly, the recently published Localism Bill set out a series of
measures to strengthen local democracy by devolving significant new
powers to councils and establishing new rights for local people and
communities, including greater powers for local people to hold their local
authorities to account. If these measures are implemented, they could
go some way to mobilising disabled BMER communities to organise
around their specific needs and interests. However these policy
intentions cannot be realised without funding, particularly given the
impairment needs of so many disabled BMER people. A lack of core
funding has led to an over-reliance on volunteers, which can be
unsustainable in the longer run. This trend, given the current spending
cuts, is only likely to continue.

2.18 There are an estimated 600 refugee community organisations
(RCO’s) based in London and around 5,000 BME voluntary and
community organisations.43 The government’s policy on investing in
voluntary and community sector provision has the potential to achieve
important advances in the way the sector develops in the future. The
Home Office ‘Change-Up Strategy’ has supported the developmental
needs of infrastructure second tier organisations in particular. It has
been instrumental in setting up BMER networks across the region
supporting front line delivery organisations, providing advice and
information, as well as campaigning to improve local services.

The Third Sector Strategy has also emphasised the important role that
the voluntary and community sector plays in the planning and delivery of
public services. In the current climate of funding cuts, it is impossible for
long-term planning to be undertaken. A more competitive climate tends
to favour larger more established organisations that are adept at
collecting and using evidence to lobby on behalf of their own particular
issues and concerns.




43
 ‘Estimates from the Council for Ethnic Minority Voluntary Organisations’; Skyers-Poorman
Research and Consulting Comparative Policy Analysis, Op. Cit.
                                                                                       33
These organisations can also prevent new entrants, including BMER
groups working at the neighbourhood level, from accessing scarce
public sector resources.44

2.19 There is a need to reframe the debate about the sector so that
groups representing particular interests, such as disabled BMER
Londoners, are not seen as merely an adjunct to mainstream services or
even as opponents. They should viewed both as part of the fabric of
mainstream provision and as equal partners in service provision to
particularly deprived communities. The voluntary and community sector
makes clear, as does the considerable body of research evidence that
has underpinned the production of Mayoral Strategies for London since
2000, that effective interventions come in a variety of shapes and sizes
mirroring the diversity of London.

Anti-discrimination and equality legislation

2.20 Since the ground-breaking legislation of the 1960s, there have
been a considerable number of additions and amendments to anti-
discrimination and equality legislation, culminating in the Equality Act
2010. The development of anti-discrimination and equality legislation
has moved beyond individual acts of restitution to addressing
institutional forms of discrimination, including that experienced by BMER
groups and disabled people. This approach to tackling discrimination
resonates with the social model of disability in seeing the experience of
discrimination as being located in institutional processes and structures.

 A paradigm shift in the legislative landscape, following Sir William
Macpherson’s Inquiry into the Death of Stephen Lawrence, was reflected
in the Race Relations Amendment Act 2000. The Disability
Discrimination Act 2005 also tackled institutional discrimination.
However, despite these developments and a number of linked policy
initiatives, BMER groups and disabled people continue to experience
systemic discrimination, highlighting the need for vigorous enforcement.


44
  Skyers-Poorman Research and Consulting, Improving Commissioning Processes: BME
Mental Health Service Users in Lambeth and Southwark, (London Development Centre,
2006)
                                                                                    34
Such discrimination is reflected in the pattern of inequality which marks
the lives of disabled people, as the review of the evidence below
demonstrates. This is particularly so for those from a BMER community.

2.21 The Equality Act 2010 has replaced the UK’s principal separate
pieces of anti-discrimination legislation in relation to disability, race,
gender, sexual orientation, religion and belief, and age. The Act
consolidates existing law and extends the law in a number of areas. The
Equality Act replaces the former positive public sector duties with a
single general public sector equality duty, which is underpinned by
specific equality duties, which will come into force in April 2011. One of
the key provisions in the Act is the removal of the current list of
capacities in the definition of disability which is intended to make it
easier for people to know whether they are protected by the legislation
and a stronger duty to provide information accessibly. It is important to
note that whilst the Act has some positive aspects, not least in the
extension of protection from discrimination to people who suffer
discrimination because they associate with others who have a protected
characteristic, there are a number of concerns. These revolve
principally around what is seen as a watering down of the specific duties,
and the lack of regulatory focus and action within the EHRC. Disability
groups have expressed a number of concerns about the EHRC in this
context.45

2.22 Those sections of the Act which confer powers on Ministers to
bring its provisions into force by commencement order or regulation
were enacted upon Royal Assent. All other provisions will come into
force in stages. The Government Equalities Office has confirmed that
clause 203 of the Act which will repeal, amend and revoke the existing
legislation will not come into force before those clauses of the Act which
are intended to replace the existing law are brought into effect.




45
     Skyers-Poorman Research and Consulting, Comparative Policy Analysis, Op Cit.
                                                                                    35
The table below summarises the former and current national legislative
context for equalities:

 Summary of Former and Current Key Equality Legislation

Previous legislation in relation to Race, Disability, Gender Positive
Duties

Disability –          Elimination of unlawful discrimination against
Disability            disabled people
Discrimination
                      Elimination of harassment
Act, 2006; Carers
and Disabled          Promotion of equality of opportunity
Children Act,
                      Promotion of positive attitudes towards disabled
2000; Disability
                      people
Discrimination
Act, 2002             Encouraging the participation of disabled people
                      in public life

                      Treating disabled people more favourably to
                      achieve equality

                      Extending the provisions to include HIV, cancer,
                      and Multiple Sclerosis

                      Local authorities are able to provide direct
                      payments to young disabled people aged 16 or
                      17 and to the parents of disabled children under
                      the provisions of the 2000 Act. The 2002 Act
                      amended the DDA to more fully cover
                      education.

Race – Race           Elimination of unlawful racial discrimination
Relations Act
                      Promotion of equality of opportunity
1976, Race
Relations             Elimination of racial harassment
(Amendment) Act
2000                  Promotion of good race relations



                                                                         36
Gender – Sex           Elimination of unlawful discrimination on
Discrimination         grounds of gender
Act, 1975; the
                       Elimination of unlawful discrimination on gender
Equal Pay Act,
                       reassignment
1970; the Gender
Recognition Act,       Elimination of harassment
2004; the Equality
Act, 2006              Promotion of equality between women and men

                       Promotion of good relations between women
                       and men

Age, Sexual Orientation, Religion and/or Belief

Age –                  All aspects of employment, training and job
Employment             seeking unless objectively justified, goods and
Equality (Age)         services, national default retirement age of 65,
Regulations, 2006      removal of upper age limits on unfair dismissal

Sexual                 All aspects of employment and training, goods
Orientation –          and services, speculation about a person’s
Employment             sexual orientation, offensive jokes or comments,
Equality (Sexual       perceived sexual orientation and discrimination
Orientation)           on grounds of association
Regulations,
2003, Civil
Partnership Act,
2005, Equality
Act, 2006

Employment             All aspects of employment and training, goods
Equality (Religion     and services, speculation about a person’s
and Belief)            religion or belief, offensive jokes or comments,
Regulations,           perceived sexual orientation and discrimination
2003; Equality         on grounds of association
Act, 2006

Equality Act, 2010, current legislation in relation to disability, race,
gender, sexual orientation, religion and belief and age

                                                                           37
Equality Act, 2010   The Act replaces previous legislation and brings
granted Royal        together the various strands of equality law into
Assent on 8 April    a single body of legislation. It embraces
2010                 disability, race, gender and gender
                     reassignment, age, religion and belief, sexual
                     orientation, and pregnancy and maternity. The
                     key provisions of the Act include the following:



                     A new Single Equality on public bodies

                     A simplified definition of disability

                     Strengthening protection from discrimination for
                     disabled people

                     A new socio-economic duty

                     Gender pay and equality audits

                     Banning age discrimination outside the
                     workplace

                     Protecting carers from discrimination

                     Using public procurement to improve equality

                     Extending the scope to use positive action

                     Strengthening enforcement powers

                     Protection from multiple-direct discrimination on
                     two combined grounds




                                                                         38
2.23 The Human Rights Act 1998 also grants those in the UK certain
fundamental rights and freedoms contained in the European Convention
on Human Rights. Sixteen basic human rights have been incorporated
into UK law, some of which are particularly applicable to those seeking
refugee status in London, such as a right to life, and protection from
torture and killing. The rights also cover freedom of expression and
belief and the right to a fair trial. The Act also contains a number of
provisions which are directly applicable to the needs of disabled people.
These centre on the right to benefit from measures enabling enjoyment
of the right to health, the right to independent living, social integration,
and participation in the life of the community. Other rights include those
protecting disabled people from poverty and social exclusion, as well as
the right to adequate social benefits and care in times of ill-health. The
coalition has proposed a review of human rights legislation.




                                                                          39
Section Three: BMER groups and their access to mainstream
services

3.1 This section considers the provision of health, adult social care,
welfare benefit and transport services and questions whether they meet
the needs of disabled BMER groups.

There is a plethora of government initiatives which are designed to
deliver equality for disabled people and other disadvantaged groups.
The ‘Improving Life Chances for Disabled People’ and ‘Every Disabled
Child Matters’ strategies both set out actions to improve opportunities for
disabled people.46 The New Deal for Disabled People has the stated
aim of assisting disabled people and those on health-related benefits to
move into sustainable employment and the 2006 White Paper, ‘Our
Health, Our Care, Our Say’, sets out a vision to provide people with
good quality social care and NHS services in their local communities.
The three key building blocks of the Department of Health’s Delivering
Race Equality Agenda and Action Plan, ‘more appropriate and
responsive services’; ‘engaging communities’ in service design and
commissioning, and critically, ‘better information’, were developed to
enable health and social care agencies to deliver improved mental
health care and treatment to BMER communities.47 Valuing People Now,
a three year strategy launched in 2009 aims to improve the lives of
people with learning difficulties and the lives of their families and carers
and covers a number of policy areas: employment, housing, families,
health, workforce issues, advocacy, hate crime and reaching out to BME
communities. The move towards personalised budgets and proposed
reforms to the delivery of social care as set out in the Adult Social Care
Green Paper have major implications for access to services among
disabled people.




46
   Although we focus mainly on adults in this review we present some evidence that children
from BMER families face disadvantage in service provision which may impact throughout
their lives.
47
  See ‘Delivering race equality in mental health care: An action plan for reform inside and
outside services’, (Department of Health, 2005).
                                                                                              40
3.2 The following section presents the current difficulties that disabled
BMER communities have in gaining equal access to mainstream
services. This report is written at a time of great uncertainty about the
policies that will, in the future, underpin the government’s commitment to
improving health and social care, welfare benefits and transport
services. We do not yet know how policies will change and how those
changes might affect disabled BMER communities and organisations
that support them.

We look at each sector separately, but we have also identified critical
points at which they interconnect to shape the way disabled BMER
groups experience services. Joined up services were originally intended
to provide a seamless service to users, and to improve overall
effectiveness by bringing together separate planning and delivery
systems and processes. But this approach has, in truth, done little to
challenge the barriers that exclude disabled BMER people from
mainstream services.

Health and social care

3.3 This section considers ongoing changes to health and social care
services and assesses what this will mean for disabled BMER groups.
There are a range of services that affect the lives of disabled people and
on which they depend. These range from nursing and residential homes,
community services such as home care, day care, meals on wheels, and
physiotherapy and support to prevent hospital admission or to enable
continued independence and intermediate care after a spell in hospital.
They also include supported accommodation and other forms of housing
as well as access to individual budgets.

The new coalition government has introduced a package of reforms
which will change the way in which health and social care services will
be commissioned and delivered over the next five years.




                                                                          41
The factors underpinning such reforms include the pace of demographic
change, the increasing number of people requiring long term care and
support, the economic downturn resulting in stringent cuts to front line
services, a growing concern with health inequality, the need for better
service alignment and integration, and the need to introduce customised
commissioning. The proposed changes in policy present strategic
opportunities to influence government thinking through for example,
consultations on the new National Care Service, the important role of
carers and securing better welfare benefits that are not linked to medical
assessments. The National Care Service and the policy and legislative
changes supporting it, will seek to introduce a comprehensive free
service for all adults with an eligible care need. However, this is in turn
threatened by changes to eligibility care criteria and the lack of
awareness of services.

The coalition’s plans for health and social care

3.4 The reforms to the care and support system proposed in the White
Paper, ‘Building the National Care Service’, envisage the establishment
of a comprehensive National Care Service for all adults in England with
an eligible care need, free at the point of need. The National Care
Service will be built in stages, the first of which is the Personal Care at
Home Bill 2010. This will help an estimated 400,000 people with care
rights and will entitle 280,000 people with the highest needs free
personal care at home.

The Coalition also intends to extend the use of personal budgets, with
the stated aim of giving disabled people and their carers more control.48
The introduction of direct payments and the personalisation agenda
have already offered some disabled people greater independence and
flexibility in support arrangements. They could also improve access to
culturally sensitive support.




48
   ‘A vision for Adult Social Care”, (Department of Health, 2010), available at:
http://www.dh.gov.uk/en/Aboutus/Features/DH_121664
                                                                                   42
Indeed, for people with mental health problems, direct payments can
facilitate social inclusion through the provision of support to mainstream
activities that are not just focussed on mental health and are not seen as
stigmatising.49 Whilst control over personal budgets is important in
securing independent living and equality, there will be concern about
how personal budget systems may operate in practice in a context of
large scale spending cuts, particularly given service reduction overall
and cuts in the public sector. By enabling more freedom and control over
the way in which services are delivered, it could be possible for care to
be adapted to suit the social and cultural needs of users and their
carers; direct payments can, in many instances, provide a good match
between users and care assistants.50 There is also some evidence that
direct payments can work for older people from BMER groups - if linked
to the provision of community workers to help bridge the information gap
between social services and the community.51

3.5 The establishment of a Commission on Long Term Care, has
committed itself to extending the roll-out of personal budgets and direct
payments to give disabled, older people and their carers more control,
and to help older people to live at home for longer through home
adaptations and community support programmes, all of which form part
of the government’s new agenda. However, although this is a welcome
step in the right direction, there is no evidence to suggest that it caters
for the expected rise in the number of disabled young adults and older
people with potential care rights and entitlements from under 6 million
now, to 7.66 million in 2030, an increase of around 1.7 million over 20
years.52



49
 Karen Newbigging, and Janice Lowe, Direct payments and mental health, (Joseph
Rowntree Foundation, 2005)
50
   Policy Briefing on Welfare Reform – Employment and Support Allowance (Department for
Work and Pensions, 2009), available at:
http://wwe.dh.gov.uk/prod_consum_dh/groups/dh/digitalassets/@dh/@en/dcouments/digital
assets/dh_080457.pdf
51
  Heather Clark, Helen Gough and Ann Macfarlane, ‘It pays dividends’: Direct payments
and older people, (Joseph Rowntree Foundation, 2004)
52
 Policy Briefing on Welfare Reform – Employment and Support Allowance (Department for
Work and Pensions, 2009), available at:
                                                                                   43
This will place greater public expectations on services at a time when
quality and responsiveness is being compromised by changes to the
rights and entitlements of mainstream services.

3.6 It is not yet clear how these policy changes will affect disabled
BMER communities. Disabled people from BMER groups do not enjoy
the same rights and entitlements of disabled people generally, as a
number of additional barriers are inextricably linked with their access
needs. For instance, recent research suggests that there continue to be
very few instances of direct payments being made to people with
learning difficulties from ethnic minorities.53 The lack of evidence does
not negate the demand for better and more accessible culturally
appropriate services catered to the needs of disabled BMER
communities. The Commission on Long Term Care could play an
important role in addressing these unknowns as a central part of its role
in responding to the inherent failure of care services and the inequitable
distribution of good quality services across London. People with the
same rights and entitlements receive different levels of care depending
on their geographical locations and the constituent parts of the care and
support system do not always work together.

Many people have negative experiences of the care and support system.
Many are particularly confused by the eligibility criteria and assessment
framework. There is also an overreliance on high level risk assessment
criteria rather than on prevention. Campaigning organisations have
called for the government to comply with the Disability Discrimination Act
1995 and give disabled people enforceable rights in all areas of life,
developing personalised services that are flexible and adaptable to suit
different rights and entitlements, and to give disabled people more
control over their own care, direct payments and personal budgets.




http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digital
asset/dh_080457.pdf
53
  Ghazala Mir, Andrew Nocon and Waqar Ahmad, with Lesley Jones, Learning Difficulties
and Ethnicity, Report to the Department of Health, (Department of Health, 2001)
                                                                                        44
3.7 The ‘Renewal Plan for a Better NHS’, which introduces combined
personal budgets for people with health and social care rights and
entitlements does not make an explicit commitment to addressing the
rights and entitlements of disabled people. The Plan has retained the
contested means-tested assessment for social care, which presents
barriers for certain income groups, and has kept the free element
covering healthcare rights and entitlements. This demonstrates that
further steps are needed to encourage a full integration of health and
social care services.

The question of who will pay for improvements to health and social care
services continues to shape the direction the government will take and
the government has already shifted its stance from an explicit
commitment to offering free personal care services to an aspiration.
Young people will be assessed on their income, for instance. The
Commission on Long Term Care has proposed two options for older
people: the first is a voluntary insurance assessment scheme to protect
those who go into residential care and the second is a partnership
scheme. These proposals may create a system with ‘have’s’ and ‘have
not’s’, and will disadvantage individuals on low and insecure incomes,
among which disabled BMER communities are disproportionately
represented. Indeed, the financial impact of caring may be even greater
on BMER families who often do not receive full benefits.54 Campaign
organisations have called for services to be free to all and for a better
alignment of entitlements and assessments and more flexible and
personalised services wrapped around the needs of vulnerable groups.




54
  Supporting Disabled Children and their families, (Joseph Rowntree Foundation, 1999), a
report summarising a five year programme of research on the issue. See, also, Minority
ethnic families caring for a severely disabled child, (Joseph Rowntree Foundation, 1999).
                                                                                        45
Immigration legislation and access to health and social care
services

3.8 The 1998 ‘Fairer, Faster, Firmer: a Modern Approach to
Immigration and Asylum’ White Paper, the subsequent Immigration and
Asylum Act 1999, the consultation paper on the integration of recognised
refugees in the UK and ‘Secure Borders, Safe Haven: Integration with
Diversity in Modern Britain’ largely failed to consider or include disabled
refugees and asylum seekers.55 The introduction of restrictive
immigration legislation affects both the numbers of disabled refugees
accessing mainstream services as well as the services front line delivery
organisations can provide. For this group of disabled people,
entitlement is not just linked to a health care and the welfare benefit
system; it is also linked to their fundamental human right to live in peace
and security. Studies undertaken by the Refugee Council highlight the
experiences of some of the most vulnerable groups who enter this
country including older refugees and vulnerable women.56

Mental health care services

3.9 The introduction of a new Minister for Mental Health could signal
an attempt to tackle some of the more intractable issues around
treatment and care of those affected by mental health conditions,
particularly in the BMER communities. Addressing mental health
discrimination is explicit in the coalition agreement, but a new
Department for Public Health, which had been mooted by the
Conservatives before the general election, did not appear in that
agreement. This has led some to question how serious the government
is about reform of the health system.
55
  Jennifer Harris, ‘All Doors are Closed to Us’: a social model analysis of the experiences of
disabled refugees and asylum seekers in Britain’, Disability & Society, 18, 4, 2003, pp395-
410
56
    Older Refugees in the UK: A Literature Review, (Refugee Council, 2008); A Working
Paper for the Older Refugees Programme – A Literature Review and Interviews with
Refugees, (Refugee Council, Age Concern and Association of Greater London Women,
2008) and Refugee and asylum seeking women affected by rape or sexual violence: a
literature review (Refugee Council, 2009), available at:
http://www.refugeecouncil.org.uk/policy/position/2009/vulnerable_women/
                                                                                            46
Experiences of discrimination, disadvantage and injustice can increase
mental health problems among BMER groups. Refugees and asylum
seekers may face increased stress over the uncertainty about their
future as well as the living through the aftermath of war, torture and
being a witness to such acts involving family and friends.57

The disproportionate number of BMER groups living in deprived areas
with high rates of mental ill health is well reported.58 In contrast to
barriers to preventative mental health care services, BMER groups have
higher rates of hospital admission and compulsory detention, although
there is still insufficient research on the reasons for these elevated
rates.59

Whilst experiences between different BMER groups do vary, there are
some shared experiences in terms of access to effective and appropriate
mental health services.60

BMER people are often first identified as having mental health problems
when they present as offenders in the criminal justice system. Only then
are they referred to mental health services. A lack of awareness of
information about mental health services; a lack of access to appropriate
language services; dissatisfaction with mainstream services; the stigma
attached to mental health problems, and institutional racism are all
factors in the reluctance of BMER communities to ask for support from
mental health services. It seems that people from BMER communities
often face double discrimination when they also have mental health
problems.61




57
  Jennifer Harris, ‘All doors are closed to us’: a social model analysis of the experiences of
disabled refugees and asylum seekers in Britain, Disability and Society, 18,4, 2003, pp395-
310
58
     ‘Health Inequalities Strategy’, (Greater London Authority, 2010)
59
  Ruby Green, Richard Pugh and Diane Roberts, ‘Black and minority ethnic parents with
mental health problems and their children’, (Social Care Institute for Excellence, Research
Briefing 29, 2008)
60
     Ibid.
61
     The evidence is reviewed by Narayanasamy, Aru (1999), Op Cit.
                                                                                              47
3.10 Some Primary Care Trusts recognise these rather thorny issues.
They have attempted to use the commissioning process to reverse the
patterns of service use. They are funding preventative measures to
support good mental health in BMER communities, so that they have
equal treatment to the general population, thus diverting people from
using high cost services such as hospital inpatient care and crisis and
breakdown services that often result in high rates of relapse and
readmission.62 But these are isolated cases. It is therefore not surprising
that a number of surveys undertaken by the NHS have revealed lower
levels of satisfaction among people from BMER communities.63 A wider
understanding of a ‘social model’ of mental ill-health which emphasises
independence and recovery is urgently required.

3.11 Changes at the national level have important implications for the
planning, delivery and funding that supports these activities at a local
and regional level. Despite the introduction of the Personal Care at
Home Bill, there continues to be little mention of disability in key
legislation and strategies on health and social care. An Autism Bill was
introduced in 2009 and is the first impairment specific piece of legislation
but it has not been universally welcomed and major omissions include
the failure of the legislation to deal with sensory access, communication
issues and user-empowerment.64 Disability does not feature to any
significant degree in the Department of Health’s ‘Strategy on Health
Inequalities’, the Health and Social Care Act 2008 or the Social Care
White Paper.




62
  Skyers-Poorman Research and Consulting, Improving Commissioning Processes: BME
Mental Health Service Users in Lambeth and Southwark,(London Development Centre,
2006)
63
  A Szczepura, ‘Access to health care for ethnic minority populations’, Postgraduate Medical
Journal, 81 (953): 141-147, 2005
64
     www.bhfederation.org.uk
                                                                                         48
London and health inequalities

3.12 Changes to national policies on the future of health and social care
have coincided with the publication of the ‘Health Inequalities Strategy
2010’ by the Mayor of London. One of the key objectives of the ‘Health
Inequalities Strategy’, published in April 2010, is to improve access to
high quality health and social care services, particularly for Londoners
who have poor health.

BMER Londoners tend to live in the poorest areas and this has a
negative impact on their experiences of health care services. The
average life expectancy for men and women in the Royal Borough of
Kensington and Chelsea, in West London, is 85.7 years; the average in
the East London borough of Tower Hamlets is just 77.8 years. The latter
borough has a disproportionately high number of people from BMER
backgrounds. Health inequality is clearly linked to poverty as well; areas
of London with the highest levels of need also have relatively poor
access to GP and other primary healthcare services.65 Area inequalities
in health reflect people’s socioeconomic circumstances and as a result,
higher levels of area deprivation are associated with higher rates of
mortality.66

The ‘Health Inequalities Strategy’ is a renewed attempt by the Mayor to
engage with London’s most vulnerable communities and to provide
opportunities for them to influence the commissioning and monitoring of
health and social care services at a regional level. But the lessons learnt
from the London Refugee Economic Action (LORECA), the former pan-
London initiative aimed at supporting London's refugees to become
economically active, need to inform future engagement strategies and
plans.




65
     GLA Health Inequalities Strategy, (Greater London Authority, 2010)
66
 ‘Tackling Health Inequalities, Status report on the programme for action’, (Department of
Health 2007)
                                                                                             49
3.13 The Greater London Authority (GLA) has a key leadership role in
bringing together the London Health Commission, NHS London and
other stakeholders to address the issues highlighted in the ‘Health
Inequalities Strategy’. The recent ‘Equal Life Chances for All London’s
Communities’ and the GLA’s ‘Race Equality Scheme 2010-2011’ outline
the Mayor’s ambitions to tackle stigma and raise awareness of mental
health issues, HIV, and other ‘invisible’ impairments, including, for
example, lupus, which disproportionately affects those from BMER
backgrounds.67 Addressing the lack of preventative services tailored to
such groups and the lack of specialist service provision such as
language support and advocacy are key aspirations of the scheme. The
Race Equality Scheme has also made a commitment to strengthen the
evidence base to address health inequalities; this presents an
opportunity to address the experiences of disabled BMER communities.

3.14 NHS London provides strategic leadership for all of the NHS health
services in the capital and has responsibility for the performance of 31
primary care trusts (PCTs), 21 acute trusts, three mental health trusts
and the London Ambulance Service. (A further 15 foundation trusts in
London have self-governing status.) The NHS London Strategic Plan
gives direction to PCTs on the priorities of service development,
commissioning, and performance management. Despite its significance
to addressing health inequality, there is very little reference to the rights
and entitlements of disabled people and a notable absence of the
experiences of BMER groups in the Strategic Plan. It is at the discretion
of PCTs whether to invest in services targeted at disabled BMER
groups. Given the current economic climate, the proposed changes to
the role and funding of PCTs, and competing local priorities, much work
needs to be done to bring about better understanding of the particular
issues facing BMER communities and the changes required to improve
their experiences of health and social care services.




67
  ‘Equal Life Chances for All Communities’, Greater London Authority Race Equality
Scheme 2010-2011, Op. Cit.
                                                                                     50
Achieving equality in health and social care services

3.15 Popular policy interventions focused on addressing health and
social care inequalities often begin by adopting a medical perspective of
disability. This results in a narrow focus on physical access; it does not
challenge how services are designed and provided, or consider the
social model of disability, and how deprivation and other factors can put
disabled people at greater risk in some contexts. For instance, people
with learning difficulties and/or mental health support needs are more
likely than other people to experience many killer diseases and they are
more likely to experience heart disease, stroke, respiratory illness and,
diabetes. They are also at greater risk of obesity and are more likely to
smoke. Both groups are more likely to become ill at a younger age, and
are more likely to die young. Improving health standards as a whole in
deprived areas requires a focus on disabled BMER people that
recognises their particular cultural context.

Commissioning locally responsive health and social care services

3.16 The commissioning of health and social care services is a good
starting point from which to assess how services can be reconfigured
and better aligned to the rights and entitlements of disabled BMER
Londoners. Voluntary and community organisations can influence local
investment priorities through the Joint Rights and Entitlements
Assessment Framework for commissioning local services through PCTs
and boroughs. The rights and entitlements assessment process
provides an opportunity for dialogue, engagement, challenge and
partnership work, to secure the best health outcomes for the most
vulnerable groups. This can be used as the avenue through which to
demand better data sets on health outcomes for disabled BMER
communities, such as premature deaths from cancer or heart disease,
broken down by type of impairment/health condition, such as hearing
impairment, visual impairment, mental health problems or learning
difficulties.




                                                                         51
However, the engagement of infrastructure organisations in partnership
structures is under threat, as the coalition government proposes to
change the way infrastructure organisations are funded and the type of
campaigning work they get involved in, with an emphasis on social
rather than political campaigns. The government is putting more funding
behind front line organisations that are willing to enter contractual
relationships with infrastructure organisations.

3.17 Practice-based commissioning also gives clinicians the tools to
plan and shape the nature and range of local services available to their
practice population. Without information on the level of risk experienced
by disabled people, and the types of interventions that would make a
difference to disabled BMER groups, commissioners would not be able
to use these tools with any degree of precision. Community influence is
often balanced against national targets and drivers of change.

The experiences of BMER groups on health and social care
services

3.18 A social care model that addresses the social determinants of poor
health and social care is clearly required. Changes to these
determinants include improving educational attainment and tackling low
basic skills, improving housing stock, improving the accessibility,
punctuality, reliability and use of local transport, tackling unemployment
and inactivity and improving access to social and community facilities
and services. GPs have an important role in providing access to the
range of health care services available. The White Paper, ‘Our health,
our care, our say’ endorses this approach, which was central to the
Darzi Review. That review outlined a package of measures to improve
access to primary care, including £250 million to deliver at least 100 new
GP practices in the most deprived areas with the fewest GPs and
nurses. Increasing the number of health-care workers from BMER
backgrounds could help to break down the lack of understanding of the
needs of the disabled BMER population.




                                                                        52
Addressing attitudinal and cultural barriers to health and social
care

3.19 There is also evidence that many of the issues described in
relation to health care are some of the most salient issues in the
provision of social care services for people from BMER communities.68
There is less evidence on the specific barriers that affect how disabled
people from BMER communities use health and social care services.
Research suggests that the most significant include the complexity of
systems for accessing help, language barriers, lack of linguistic and
cultural competence within services, attitudes towards disability within
BMER communities and institutional racism within health and social care
agencies.69 There is also some evidence of poor service provision for
conditions that predominantly affect people from BMER communities
such as sickle cell anaemia, and poor access to services which relate to
conditions that are rare in BMER groups, such as cystic fibrosis.70

Navigating through complexity

3.20 There are no standard approaches to the entitlement of health and
social care services. This poses a particular problem for people who
move from one borough to another. Disability Alliance UK has argued
that:

‘Each council’s different policies for who is eligible for support, service
charges for care, with associated assessments and bureaucracy have
made care services one of the most difficult areas of public services to
navigate for disabled people, older people and their families’.71




68
  Kusminder Chahal, Why are minority ethnic communities often ignored in policy and
practice responses? (Joseph Rowntree Foundation, 2004)
69
     Szczepura (2005), Op Cit; Chahal (2004) Op Cit; Narayanasamy (1999), Op. Cit.
70
  Walid El Ansari, Karen Newbigging, Carolyn Roth and Farida Malik, ‘The role of advocacy
and interpretation services in the delivery of quality healthcare to diverse minority
communities in London’, Health and Social Care in the Community, 17,6, 2009, pp636-646
71
     www.disabilityalliance.org/press12.htm
                                                                                       53
3.21 In relation to disabled people from BMER communities, research
has shown that a low take-up of services does not indicate a lack of
need. This is often due to a lack of information in suitable formats about
entitlements to services and how to access them.72 Agencies have
sprung up to assist disabled people to negotiate their way through this
complex system of entitlement (which varies between refugees and
asylum-seekers), to identify sources of help and advice and to ensure
that they receive the support to which they are entitled. Research with
disabled refugees and asylum seekers has shown that many have
unmet personal care needs, such as assistance with washing and
dressing and a lack of aids and equipment. Many are unaware that they
may be entitled to help with these tasks. A lack of knowledge about
entitlement among disability organisations, difficulties accessing ESOL
English language classes for financial and impairment reasons and a
lack of knowledge about how to negotiate with social services and the
benefits systems has led to individuals missing out on benefits and
services.73 Disabled people from BMER communities may therefore
have problems in accessing information because of the language
barrier.




72
  Ayesha Vernon, User-defined outcomes of community care for Asian disabled people,
(Joseph Rowntree Foundation, 2002)
73
  Keri Roberts and Jennifer Harris, Disabled people in refugee and asylum seeking
communities, (Joseph Rowntree Foundation, 2002)
                                                                                      54
Language barriers

3.22 The development of interpretation and advocacy services for
BMER communities has arisen out of evidence that language can act as
a barrier in accessing health and social care services.74 There is
evidence of poor provision for community languages and sign language
interpreters. It can be difficult for refugees and asylum seekers to attend
language classes because of finance or because of an impairment.75 A
recent review suggests that older refugees and asylum seekers would
benefit from psychotherapy but that this is not possible because of
language problems.76 Concerns have been raised about the tensions
between interpreters acting as gatekeepers to resources and advocates
for parents of disabled children who are from BMER backgrounds.77 The
role of community organisations in providing interpreters to overcome
such barriers is significant.78

Cultural responsiveness

3.23 Research with BMER groups has pointed to the lack of linguistic
and ‘cultural responsiveness’ by service providers.79 Experiences of
social services, health services and schools reveal a lack of
understanding of the problems faced by some BMER families. Cultural
and religious needs are not taken into account and research with young
people who care for disabled or ill family members found concerns that
mainstream young carers’ services did not consider their children’s racial
identity or had criteria that excluded members of the family.80

74
     See, for example, Ansari et al, (2009) Op Cit.
75
     Roberts and Harris (2002), Op Cit.
76
  Naomi Connelly, Lora Forsythe, Guy Njike and Anya Rudiger, Older Refugees in the UK:
A Literature Review, (Refugee Council, 2002)
77
  Bogusia Temple, Alys Young and Joanna Bolton, ‘They know where to find us...’ Service
providers views on Early Support and minority ethnic communities’, Disability & Society,
23,3, 2008, pp223-234
78
   Claire Alexander, Rosalind Edwards and Bogusia Temple, Access to services with
interpreters: user views, (Joseph Rowntree Foundation, 2004).
79
     Ansari et al, (2009) Op Cit.
80
   Adele Jones, Dharman Jeyasingham and Sita Rajasooriya, Invisible families: The
strengths and rights and entitlements of Black families in which young people have caring
responsibilities, (Joseph Rowntree Foundation, 2002)
                                                                                            55
Providers of services for refugee communities may be ill informed about
their disability rights, making it difficult for them to provide appropriate
services.81

3.24 As well as access, BMER communities face additional barriers.
These are not just physical: attitudes towards disability and race can
affect how such communities are seen and which services they are
offered.

Institutional racism

3.25 Discrimination on grounds of race and disability by providers has
been well documented.82 An example of this is research that evaluated
Early Support services for disabled children which found that some
service providers were of the view that BMER families should take
responsibility for finding their own services. The research also found that
there was an absence of translated or accessible material, and that
service providers acted as gatekeepers to information on what was
available. BMER families’ rights and entitlements were not included
from the outset in planning services but were a bolt-on.83

3.26 Disability Alliance UK suggests that families from BMER
communities are particularly disadvantaged by the current system of
childcare provision. Whilst this research focuses on adult care, there is
evidence to suggest that inequalities in access and discrimination are
evident for disabled children whose parents are from BMER
communities and that this has a lifelong impact but that it can be
mitigated by early intervention.84




81
     Harris (2003) Op Cit.
82
  Sarah Salway, Lucinda Platt, Kaveri Harriss, and Punita Chowbey, ‘Long-term health
conditions and Disability Living Allowance: exploring ethnic differences and similarities in
access’, Sociology of Health & Illness, 29, 6, 2007, pp907-930
83
  Bogusia Temple, Alys Young, and Joanna Bolton, ‘They know where to find us...’ Service
providers views on Early Support and minority ethnic communities, (Disability & Society,
23,3, 2008, pp223-234
84
     Ibid.
                                                                                               56
Attitudes towards disability

3.27 Attitudes to disability within BMER communities may restrict or
enable independence.85 Independence can be restricted, for example,
by culturally specific views on the position of women or the abilities of
disabled people. For example, research has indicated that some South
Asian young disabled people are of the view that families and
communities have low expectations of disabled people.86 Gender is also
important: disabled young women face more restrictions within Asian
communities than both their disabled and non-disabled brothers and
non-disabled sisters.87 Deaf people have been shown to feel
marginalized from their own religions and cultures and from white Deaf
culture that does not respect diversity.88 Deaf people and their families
lack a common language in which to communicate and there is concern
that Deaf people find it difficult to learn about their ethnicity and religion
and discrimination within communities is therefore a concern.89

Welfare benefits

3.28 Research commissioned by the Joseph Rowntree Foundation in
2002 demonstrated the insurmountable challenges experienced by
disabled refugees and asylum seekers attempting to negotiate the
welfare benefits system.90 There are several reasons for this, which
include communication difficulties, a shortage of ESOL and BSL classes,
particularly in London, anxiety, a paucity of social support, cultural
differences and a general lack of understanding and awareness about
welfare benefit entitlement. This clearly demonstrates a need for
organisations working with disabled BMER groups to develop the
capacity and expertise required to ensure that they do not continue to
experience social and economic isolation.
85
     Chahal, (2004), Op Cit.
86
     Jones et al, (2002), Op Cit.
87
     Hussain and Ahmad, (2002), Op Cit.
88
  Waqar Ahmad, Aliya Darr, Lesley Jones and Gohar Nisar, Deafness and ethnicity:
Services, policy and politics, (Joseph Rowntree Foundation, 1998)
89
     Chahal, (2004), Op Cit.
90
   Keri Roberts and Jennifer Harris, Disabled people in refugee and asylum-seeking communities in Britain,
(Joseph Rowntree Foundation, 2002)
                                                                                                         57
Entitlements to benefit

3.29 The limited research available suggests that disabled BMER
communities face multiple barriers wishing to gain access to benefits.
There is variation in the take up of benefits by ethnicity. A 2007 study
across four ethnic groups in East London has examined receipt of DLA
and issues of access in Bangladeshi, White British, Pakistani and Black
African groups. DLA receipt generally was low amongst those reporting
long-term health conditions but Bangladeshi, Pakistani, and Black
African people had significantly lower rates of receipt than White British
people with comparable health and socio-economic characteristics.91
The claimants were discouraged by a number of factors including:

       A desire to conceal an impairment;

       A reluctance to be labelled as ‘disabled’;

       Limited knowledge of benefits and support;

       Concerns that the benefits system is complex and stressful

       Concerns about the legitimacy of claiming.92

There are, however, differences within and across groups, in terms of
their take up of benefits. For example, there is low take-up of benefits
among ethnic minority women who are carers.93. However, evidence has
also highlighted the importance of social networks in differential access
to information about benefits. Among Pakistani communities, networks
were well established whereas Bangladeshi networks were less so. The
study also highlighted variations by gender, age and ethnicity. The
barriers to take up also include a lack of information, discrimination for a
variety of reasons, language barriers, feeling intimidated by the system,
the lack of a National Insurance Number, hurdles associated with the
benefits systems, and concerns among refugees and asylum seekers
about the impact of claiming benefits on their residence status.


91
     Salway et al, (2007) Op Cit, review the research.
92
     Ibid.
93
     Out of Sight, (Disability Alliance, 2003)
                                                                          58
In articulating this experience, Disability Alliance UK puts it in this way:

“Although it [the Department for Work and Pensions (DWP)] knows there
is a huge ignorance about entitlement, it continues to expect potential
claimants to be proactive in seeking benefits. In particular, the DWP
lacks any programme for targeting benefits information to hard-to reach
claimants, such as disabled and carer ethnic minority women.”94

3.30 The stereotypes and negative perceptions of disabled people
avoiding work at all costs has repeatedly been replayed as part of the
coalition government’s attempt to shift the focus from access to benefit
allowances and entitlements to ability and capacity to work. For
individuals who are reliant on benefits this will become increasingly
problematic as restrictive policies based on the medical model of
disability are introduced alongside restrictive immigration policies. For
disabled BMER people, the experience of accessing employment shows
the level of discrimination they face on the basis of their race and
disability. The unemployment rate for BME disabled Londoners is 38%,
compared to a 50% unemployment rate amongst white disabled
Londoners. The BME population also has an elevated unemployment
rate, compared to the general population.

3.31 Disabled refugees who have been granted refugee status,
humanitarian protection or discretionary leave have broadly the same
rights and entitlements to services as other UK disabled residents and
citizens. They have permission to work, can use health services and
apply for housing and welfare benefits in the same way as other UK
residents.95 Disabled asylum seekers waiting for decisions on their
application of leave, by contrast, are denied access to employment and
benefits on three counts: disability, race and immigration status. The
Immigration and Asylum Act 1999 excludes asylum seekers from most
social and welfare benefits and services. In the context of
unprecedented cuts in public services, the future of the subsistence and
accommodation support from the National Asylum Support Service
(NASS) looks uncertain.

94
     Out of Sight, (Disability Alliance UK, 2003)
95
     Interview with Maria Miller, (Disability Now magazine, July 2010)
                                                                               59
The Immigration and Asylum Act 1999 allows NASS to make special
payments to meet particular needs, for example, to someone whose
particular medical condition gives rise to special needs. However, there
is no established procedure for doing this. Although asylum seekers are
prevented from claiming disability-related benefits, they can request a
community care assessment from local authority social services. It is at
the local authority discretion to determine whether they meet the
eligibility criteria to receive services, and whether or not they will be
charged for those services.

Political context for welfare benefits

3.32 Against a background of cuts in public spending it is difficult to
predict with any certainty what the benefits system will look like by the
next general election and how much of the welfare state will be still
recognisable in its current form. The annual cost of disability related
benefits now stands at £16billion. Both the former and current
government have stated that this is unsustainable. Much depends now
on the determination of the coalition government to push through
unpopular reforms, including the extension of Employment and Support
Allowance, and the capacity of the disabled peoples’ movement to resist
what many regard as an onslaught on hard won gains. The
government’s commitment to bringing ‘lasting improvements to the lives
of all disabled people’ began, many in the disability movement contend,
with moves to reduce their rights and entitlement to benefits and
allowances and repeated policy announcements that disabled people
can only achieve status and self esteem through employment.96 The new
welfare contract signals the beginning of unprecedented changes to the
benefits system, the way in which entitlement to benefits is determined
and also to how benefits are delivered.




96
     Interview with Iain Duncan Smith, (BBC Radio 4, Today Programme, 28 June 2010)
                                                                                      60
3.33 The coalition government intends to reassess 2.5 million people
who receive benefits. Estimates by the previous government that only
5% of disabled adults claiming Employment and Support Allowance
would be assessed as incapable of work have already been exceeded
but the coalition has made no reference to this and instead is reviewing
the work capability of all 2.5 million people claiming Incapacity Benefit.97

3.34 For individuals that are reliant on benefits, this will become
increasingly problematic as restrictive policies based on the medical
model of disability are introduced for people claiming Disability Living
Allowance (DLA) and other benefits, such as the consolidation of Job
Seekers Allowance, Income Support and Incapacity Benefit/Allowance
into a Universal Work Credit and proposed changes to Attendance
Allowance, alongside restrictive immigration policies.

3.35 From 2013, people claiming DLA will go through a strict new
medical assessment to help ‘reduce dependency and promote work’,
with many current claimants set to lose out under the new regime. The
government intends to target DLA at people who are in ‘the greatest
medical need’. This may leave many disabled people who have learning
difficulties but who do not have ‘medical needs’ in a very precarious
position. DLA payments to individuals will not be reduced but the
government estimates the move will save £1.4bn by 2015, suggesting
many of those seeking support will not meet the new eligibility criteria.
This is referred to in a recent action plan for the growth of the UK
economy by the Organisation for Economic Cooperation and
Development (OECD). It acknowledges that the Government has
already restricted eligibility for disability benefits and one of its key
recommendations is that eligibility criteria are further tightened.98

“At the onset of the job crisis, 7% of the working-age population were
receiving disability benefits, 1.5 percentage points higher than the OECD

97
  ‘Where we stand on Women and Equality’, from the Conservative Party Manifesto
(Conservative Party, 2010); ‘Lifting the Barriers: Disability in Britain’, Liberal Democrat Policy
Briefing, (Liberal Democrat Party, 2009)
98
     United Kingdom – Policies for a Sustained Recovery, (OECD, 2010)
                                                                                                61
average, and 3.5 percentage points higher than that observed in 1990.
Past experience shows that entitlements do not shrink when the
economy moves from a period of recession to recovery. However, over
recent years, eligibility criteria to disability benefits have been tightened
…and new measures recently announced by the Government take a
step further in this direction.”

3.36 Furthermore, the consolidation of Job Seekers Allowance, Income
Support, and Incapacity Benefit/Employment and Support Allowance into
a Universal Work Credit has been part of the reform agenda. The
intention is that in order to maintain living costs support for those on low
incomes, benefits such as Housing Benefit and Disability Living
Allowance (DLA) should be consolidated into a Universal Life Credit.
The Disability Living Allowance (DLA), a tax-free benefit for children and
adults who are under the age of state retirement who need assistance in
looking after themselves due to a disability, has been shown to make an
important contribution towards maintaining standards of living and
continued engagement with wider society. The ‘Shaping the Future of
Care Together’ Green Paper, published in 2009, which set out plans for
a National Care Service has also paved the way for getting rid of
Attendance Allowance (AA), which is the main disability benefit for
people aged 65 and over to provide help with personal care. Disabled
people are concerned that the care component of DLA is also under
threat. The Institute for Social and Economic Research, a think-tank, has
warned that taking DLA and AA from claimants and making it part of a
personal budget administered by social services will threaten the
everyday living standards of millions of elderly and disabled people living
at home, leaving them worse off and with less independence.99 This runs
counter to the key tenets of personalisation and person-centred care.

The effect of increasing restrictions is likely to push a low take-up even
lower.




99
     http://www.iser.essex.ac.uk/publications/working-papers/iser/2008-40
                                                                             62
Attitudes towards disability

3.38 The government’s commitment to equality of opportunity and
challenging discrimination is very difficult to determine through the
reforms proposed above and its impact on access to public services and
the benefits system. The government’s new Work Programme does,
however, provide some evidence that equality is still at the heart of
welfare benefit provision, as it will extend personalised support to people
on Incapacity Benefit who are assessed as able to prepare for work,
while ensuring that people who cannot work because of a disability or
illness continue to receive unconditional support through the benefits
system, and will never be forced to work. There are also proposals to
offer practical employment support for disabled people and people with
mental health conditions, and to use a mixed range of providers from the
voluntary, private and public sector to do so.100

3.39 The Mayor of London has also introduced a series of measures
aimed at supporting disabled people. The ‘London Skills and
Employment Board’s Strategy: Recession to Recovery’ sets out a target
to ‘reduce the gap in employment within London for BAME disabled
people and lone parents from 19.4 per cent to 16 per cent’ by 2014.101
The Working for Wellness Programme, which integrates psychological
therapies with employment services, will cover up to 60% of London’s
PCT’s by 2011.102 It is not clear who stands to benefit from this initiative
or what processes could be used to ensure that it is targeted to the most
vulnerable disabled people. However, it is a welcome initiative. The
“Know Your Rights” benefit take-up campaign, which will target disabled
people, carers, and older people, will provide more information on rights
and entitlements. Raising awareness and improving understanding of
mental health issues amongst employers and using support and therapy
to assist in achieving better target rates for recruiting and retaining
disabled people are all welcome measures.
100
      ‘A New Welfare Contract’ (The Conservative Party, 2010)
101
  ‘Equal Life Chances for All Londoners’, Greater London Authority Draft Disability Equality
Scheme 2010-2011, Op Cit.
102
      Ibid.
                                                                                          63
Transport

3.40 Over the last two decades London transport has improved in terms
of accessibility, due to both pressure from disabled people and a better
corporate understanding of the diversity of Londoners and their needs.

Transport, and its cost, remains major accessibility issues for disabled
BMER groups. Consultative meetings held by statutory agencies were
often held in areas such as central London, in which BMER groups did
not live; this, therefore, exacerbated the issue of accessibility.

Therefore there is still some way to go to achieve equal access for all
and to fully integrate equality into the investment in transport services
and into the planning of transport provision. This section presents
current policy thinking as it relates to disabled people and their transport
experiences. We also outline some of the barriers to access for disabled
BMER people.

3.41 Transport For London (TfL) is required by law to ensure that its
services and policies do not discriminate against disabled people. In
December 2009 it produced its revised three year Disability and Deaf
Equality Scheme. This seeks to ensure that its policies (e.g. in
employment and procurement) and its service delivery meet this
standard. It was drawn up by various methods that involved disabled
people, including the use of a Citizens Jury of disabled people.

The Scheme was available to inform the Mayor’s Transport Strategy
2010. The TfL report on the implementation of actions on an annual
basis as part of its equality report.

The Mayor’s Transport Strategy recognises that despite the significant
improvements to the quality and quantity of its service and accessibility
of London’s transport system, more work needs to be done to ensure
that all disabled Londoners take advantage of these benefits including
tackling physical barriers, as well as attitudes of front line staff.103




103
      ‘The Mayor’s Transport Strategy’, (Greater London Authority, May 2010)
                                                                               64
However, some improvements have been secured, including a number
of new, accessible routes, widened eligibility criteria for the Dial-a-Ride
Scheme, more accessible bus stops (some 45%) and step-free access
into 31% of National Rail stations, 31% of London Overground stations
and 2% of underground stations.

However the gains that have been secured over the last decade could
be under threat if staffing cuts to London Underground continue as
planned. Campaigning organisations have raised attention to the level of
assistance available to older and disabled people and implications for
personal security.104 Many disabled people rely on assistance from staff
in order to use the system safely. The need for assistance arises both in
normal operating conditions when passengers may need help to use
ticket machines, negotiate barriers or access platforms, and during
periods of disruption and emergency, when the need for assistance is
particularly critical. Personal security is particularly important to
passengers in situations which make them vulnerable and could restrict
their right to freedom to travel.

3.42 TfL invests in consulting and engaging with disability
representative organisations. However, there is a paucity of evidence to
demonstrate that disability BMER organisations have been engaged,
and that the specific issues affecting those communities have been
identified and addressed. Important advances in transport planning have
been secured through consultation responses from disability
campaigning groups on the Strategy and these have been instrumental
in moving transport policy in London forward from a single focus on
physical disability to hidden impairment, including mental health, and
clearer language, especially around the definition of accessibility. TfL is
also focussing on disability hate crime.105 However, it is very evident
from the TfL’s own race and disability equality schemes that much more
is needed to fully understand the concerns that disabled BMER people
have about transport.



104
      http://www.transportforall.org.uk/news/open-letter-to-tfl-against-underground-staff-cuts
105
      ‘The Mayor’s Transport Strategy Stakeholder Consultation’, May 2010
                                                                                                 65
3.43 TfL consulted with disabled BME Londoners and disabled people
in the general population on their race and disability equality schemes.
However, there is little substantive evidence that brings the consultation
findings together. This highlights the need to move from individual strand
equality schemes to schemes to take account of the multiple barriers
these communities face. The research evidence supporting the 2007
Race Equality Scheme presents some important insights on the travel
patterns and experience of using public transport for BMER
communities. However, its focus is limited to gender and age and does
not include refugees.106 TfL will need to take their concerns into
consideration as well.

3.44 TfL’s Disability and Deaf Equality Scheme provides important
insights on a range of initiatives that aim to remove physical barriers to
travel and cater for the ‘whole journey approach’ and engaging and
consulting with Deaf and disabled people.107 The Scheme relies on
consulting disabled and Deaf people through a Citizen Jury approach
and there are BMER individuals represented, although the issues
specific to them do not surface often in the scheme. Personal safety and
fear of crime remain key concerns for such groups, and this affects the
choices they make on their preferred transport. The Scheme
recommends the development of a Hate Crime Strategy and will consult
with disabled and Deaf people on its development but one of its current
weaknesses is that it does not include refugees.

3.45 The Race Equality Scheme 2008-2011 begins by asking to what
extent people’s needs differ according to their ethnicity, gender,
disability, sexual orientation, age or faith. The Scheme recognises the
language barriers faced by BMER disabled people who try to access
door to door services. The research used to support the development of
the Scheme shows that older BMER communities tend to travel closer to
home and socialise with family and friends in the local vicinity.



106
  Jag Poonia, Understanding the needs of newer Black, Asian and Minority Ethnic (BAME)
communities draft report (Transport for London, 2007)
107
   ‘Equal Life Chances for All Londoners’, Disability Equality Greater London Authority,
Disability Equality Scheme 2010-2011, Op Cit
                                                                                           66
They also experience language difficulties, particularly Somali, Turkish,
Albanian and Latin American women. Dial-a-Ride now provides a
telephone translation service for non-English speaking people.
Information on the service is available in alternative languages as well
as in formats such as Braille and audio tape. Improvements to access,
however, must be linked to personal safety and affordability too, and
what impact such issues have on the lives of disabled BMER Londoners.

3.46 The research evidence supporting the Race Equality Scheme
2008-2011 does not directly provide relevant data to support the aims of
this research. The research supporting the Scheme raises a number of
issues that are relevant to disabled BMER Londoners. The lack of
English language proficiency makes the understanding of public
transport services and service communications harder and makes
transport information and assistance less accessible. This generates a
sense of vulnerability and insecurity. Interestingly the research evidence
underpinning the Scheme highlighted the experience of racism and
discrimination among Irish Travellers and Somalis from other
passengers and TfL front line staff. The more visible BMER communities
were more likely to experience racism and participants who used their
parent tongue with friends were more likely to experience discrimination
from other passengers. TfL’s response to the key messages raised in
this research was to adopt a zero tolerance policy on customer violence
against staff.

3.47 Not all areas of London have equal access to different transport
modes and the Race Equality and Deaf and Disability Equality Scheme
recommends that TFL begin to expand its networks to reach areas of
new-build. It is important that the expansion of existing networks also
takes account of the location of new migrant communities. Some BMER
communities are clustered in particular London boroughs: above
average proportions of Black residents live in Lambeth, Lewisham and
Southwark and Asian residents in Harrow, Hounslow and Redbridge. An
above average proportion of residents in Barnet, Camden, Westminster
and Sutton are Chinese and Inner London has an above average
proportion of residents who are dual heritage.


                                                                        67
BMER communities in the South and East London are more likely to
face difficulties using public transport due to the location of trains,
although this is changing with investment into transport in preparation for
the London Olympics.108

3.48 Affordability is another prominent barrier that re-emerges across
consultation responses in support of the Deaf and Disability Equality
Scheme and the Race Equality Scheme, preventing the use of public
transport. Studies show that socio-economic disadvantage and financial
insecurity may add significantly to the stress that carers experience.
Caring obligations are difficult to meet with the rising additional costs
associated with transport across London. Changes to the cost of travel,
in particular the congestion charge, disproportionately affects BMER
communities, which tend to be poorer and more vulnerable.109 The TfL
Disability Independent Advisory Group (DIAG) has the potential to
address the concerns raised in this section of the report. The DIAG has
a unique role influencing the direction of TfL strategy and making
London more accessible. However, there are currently no BMER
disabled representatives on the DIAG and no clear routes for engaging
with front line organisations that cater for the needs of those groups.




108
   Black Asian and Minority Ethnic Public Attitudes to Transport for London, The 1990 Trust
as provided to Skyers and Poorman, http://www.1990trust.org.uk/roots/
109
      Ibid.
                                                                                         68
Section Four: From policy to action

4.1 At this time of radical change in the provision of general services
disabled people are likely to rely more heavily on front-line voluntary
organisations than previously. Front-line organisations can meet this
challenge in a variety of ways, including producing accessible
information in mother tongue languages and adjusting their practice to
respond to particular impairment issues. One example might be to send
a text to a person with a learning difficulty to remind them of an
appointment time, or to support a person with a mental health condition
to arrive at the appropriate time for an appointment (which would help
them manage a potentially stressful situation).110

4.2 Research is currently being carried out into the attitudes and, in
some cases, prejudices of front line workers to disabled people and
ethnic minority communities with whom they come into contact. Many
people with learning difficulties, and their support workers and families
have told researchers that they can feel invisible to service providers,
and come into conflict with them or encounter barriers in service
provision. BMER people with learning difficulties have also complained
that they do not feel that their concerns have been heard, and have also
complained about racist attitudes.111 Carers have also reported a lack of
information to support them in their role, as well as the lack of staff with
the appropriate communication skills, as well as an ongoing problem
with staff absence. Another complaint is that some ethnic groups are
incorrectly assessed because of cultural issues, meaning that a
disproportionate number are identified as having ‘severe’ learning
difficulties.




110
   Liz Sayce, Chief Executive RADAR, ‘Access to health care for people with disabilities in
World Health Organisation’ Transcript of Podcast, 20th February 2009, available at:
http://www.who.int/mediacentre/multimedia/podcasts/2009/disability_access_20090220/en/in
dex.html
111
      As above.
                                                                                        69
4.3 The development of African Caribbean and South Asian support
groups in the field of sickle cell anaemia and thalassaemia demonstrates
that such groups can play a valuable role in identifying and addressing
gaps in mainstream services. However, self-advocacy groups for
minority ethnic adults tend to be marginalised and receive fragile support
which is constantly under threat. Most such groups in London represent
people with learning difficulties from African Caribbean backgrounds
compared to other minority ethnic groups. These organisations provide
much needed opportunities to ensure that BMER people with learning
difficulties can increase their self-esteem and express their own views
with confidence.

4.4 Campaigning organisations have called for an increase in bi-
lingual staff and interpreters to address the barriers in access to
services. Similarly, research studies have recommended training for all
staff to improve competence in cultural awareness, to prevent the
marginalisation of minority and refugee needs and to encourage the
take-up of provision. Service providers cannot adequately respond to the
variety of disability related BMER needs without accurate and ongoing
information. Monitoring procedures are currently insufficiently developed
to identify unmet need, general patterns of use or comparative service
performance. More information, for example, is required about the use
and numbers of advocates. It is thought that they are limited in number,
particularly those from minority ethnic backgrounds and representing
Deaf BMER people.

4.5 Research evidence suggests that voluntary and community
services directed at disabled people need to be better co-ordinated. This
is particularly true of services directed at disabled refugees and asylum
seekers, with researchers suggesting a review of the accessibility of
current services.112 The research evidence also recommends regular
training within organisations delivering services on issues such as rights
and entitlements, disability law, the use of interpreters, multiple
impairments, and cultural and gender issues.


112
  Supporting disabled asylum seekers and asylum seekers: opportunities for new
approaches, (Information Centre about Asylum and Refugees, (ICAR),2008).
                                                                                 70
A further issue that the research base highlights is the short-term nature
of funding for the voluntary and community sector, a lack of core
funding, and a lack of provision for full-cost recovery among BMER
organisations that provide services. Funding, of course, is an acute
issue for the voluntary and community sector as a whole, but evidence
suggests that it is particularly acute for organisations that are led by or
working with disabled people from BMER communities, where support
needs can be particularly complex.113 Research suggests that such
groups are also particularly vulnerable to budget cuts.114




113
   Becca Singh, Making change happen for black and minority ethnic disabled people,
(Joseph Rowntree Foundation, 2005)
114
   Waqar Ahmad, Aliva Darr, Lesley Jones and Gohar Nisar, Deafness and ethnicity:
services, policy and politics, (Joseph Rowntree Foundation, 1998)
                                                                                      71
Key research outcomes: a synthesis of evidence on key policy
issues arising from the research

4.6 The following section presents the key policy issues arising from the
research. They are not presented in any priority order

With the exception of mental health provision, we have found only
limited evidence of good and effective practice to overcome barriers to
service development and provision in the areas covered by this report.

Within mental health, there has been a substantial body of research
centred on progress in the provision of appropriate and accessible
services.115 However, policy makers and service providers, on a more
general level, have taken a limited, largely reactive and ad hoc approach
to the development of service provision, which still does not meet
diverse needs. This includes a limited engagement of BMER
communities in setting the research agenda. They have also, largely, not
been consulted with about developments in provision.116

The existing research identifies a number of tasks for service providers
and practitioners in relation to:

           An informed understanding of the communities with which they
            work;

           The recruitment of staff with appropriate linguistic skills and
            cultural knowledge;

           Community outreach;

           The participation of service users in commissioning;

           Culturally responsive forms of family support;




115
  Wilson Melba, ‘Delivering race equality in mental health care’, (Department of Health,
2009); Skyers-Poorman Research and Consulting, Improving Commissioning Processes;
BME Mental Health Services Users in Lambeth and Southwark, (London Development
Centre, 2006)
116
      Greene et al (2008), Op Cit.
                                                                                           72
           Practices that allow children an appropriate voice.117

Evaluations of BMER led initiatives suggest that people value and are
more likely to use services provided within their communities.118
However, there is also evidence to suggest concern about information
being transmitted within social networks, or where carers of disabled
family members are fearful of being seen within their communities as
being ‘unable to cope’. This factor can act as a barrier in accessing
services.119

4.7 A number of issues in relation to short-term funding discussed in
more detail below have particular significance for mental health
provision. The need to tackle inequality is currently being considered at
a commissioning level, although one of the key areas for improvement is
how commissioners can address the differing needs of BMER
communities in the way that they engage with communities to inform
service development and delivery. There are increasing calls for the
recognition of multiple and simultaneous disadvantage and
discrimination, such as the impact of factors like ethnicity and gender on
the lives of disabled people. Research is required in this area, and on
the needs of people with learning difficulties from African, Chinese, Irish,
Jewish, refugee and traveller communities.120




117
   The importance of outreach is stressed in relation to increasing the take-up of direct
payments by Newbigging and Lowe, (2005). Other research in relation to the issues
discussed are summarised by Greene et al, (2008).
118
      See also Out of Sight, (Disability Alliance UK, 2003)
119
   See for example, The Future Needs of Unpaid Carers, (The Scottish Executive, 2005).
That report, to which some of the researchers involved in this report contributed, involved
extensive qualitative work with carers of disabled people. Some were reluctant to access
services because of concerns about how they would be seen within the wider community.
120
      Purdam et al (2008), Op Cit.
                                                                                              73
The voluntary and community sector

A critical issue for the voluntary sector is the current financial uncertainty
in the current climate. At present, the economic downturn has also led to
an unprecedented reduction in public expenditure. Moreover, as already
pointed out elsewhere in this report, the larger and more established
voluntary organisations are more adept at responding to changes in the
external funding and contracting environment than smaller
organisations. Those smaller and emerging organisations can get
crowded out, despite the fact that the latter group can respond to gaps in
service provision for newly arrived BMER communities.

These smaller organisations are, therefore, likely to face even greater
financial constraints and, as a result, will have insufficient resources to
respond to critical needs as they are presented. For example, the cuts in
the Supporting People programme mean that initiatives that prevented
social isolation have seen funding discontinued. Therefore, the picture
for BMER disabled Londoners in terms of service provision, looks
particularly bleak in the short, medium and longer term.




                                                                            74
Section Five

Key survey findings

5.1 As stated previously, a key aim of this research project was to
gather quantitative data, in the form of a survey, from disabled people’s
organisations and organisations representing disabled BMER groups.
We also collected qualitative data about their experiences in a number of
open-ended questions, as well as collecting similar data from providers
(see 5.4, below).

5.2 We received 63 responses to the survey. These were from a
variety of organisations, some of which focused their activities on a
particular borough or a small number of boroughs, some of which were
London-wide and a smaller number with a national focus. The profile of
the organisations that responded to the survey is presented below.



      Analysis of organisations
      surveyed

      Organisations                   Total

      Organisations surveyed          63

      BMER organisations              30

      Disability specific             18
      organisations

      Generic with disability focus   45

      Focus on one borough            24

      Focus on two to five            10
      boroughs

      London-wide                     23

      UK Wide (with focus on          4
      London)

                                                                         75
Areas of London covered

5.3 We asked organisations to specify the geographical area targeted
by their services. Fifty-eight voluntary organisations (out of 63
respondents) replied to this question. Of those organisations, 35
provided services that were borough specific or worked across between
3 and 5 boroughs. Twenty-three organisations provided services across
the entire London region. Of those 23, four organisations also provided
national services.

Open-ended interviews with borough providers

5.4 We also drilled deeper into a number of responses, by conducting
13 in-depth interviews with borough providers providing a range of
services directly to disabled BMER communities and/organisations
representing them. They are detailed below. The open-ended
questionnaire designed for this part of the research project is attached
as Appendix C.



      Responses of borough providers

      Organisations                  Total

      Croydon                        5

      Merton                         1

      Harrow                         2

      Redbridge                      2

      Newham                         2

      Waltham Forest                 1

      Total Interviews               13




                                                                       76
Analysis of the survey and open-ended interviews

5.5 The results of the open-ended interviews with borough providers
and the results of the survey are incorporated into the following analysis.

The data that was sought was on:

       The profile of disabled BMER communities and barriers to the
        take up of services;
       Services provided by voluntary sector organisations working
        with disabled BMER Londoners and assisting them in accessing
        statutory and mainstream services, with information on best
        practice as well as key problems encountered;
       Barriers experienced by organisations in providing services, and
        best practice and key problems;
       Barriers to accessing services experienced by disabled BMER
        Londoners;
       Views of organisations on the kind of resources that would be
        valuable in the delivery of their services.

The key findings from the survey are set out below.

As these issues were exploratory, we designed a survey that was open-
ended in its approach and appropriate to all the groups outlined above.
The survey has been included in this report as Appendix B. In order to
maximise responses, we employed a ‘purposive sampling’ approach,
organised around a multi-pronged dissemination strategy. We sent the
questionnaires directly to targeted organisations, we disseminated the
questionnaire via the networks of voluntary infrastructure organisations
and we engaged in intensive outreach with organisations representing or
providing services to disabled BMER people through face-to-face
network meetings, attendance at events and visits to individual
organisations.




                                                                         77
Advice and Services Provided

5.6 The survey asked organisations to specify the services that they
provided. The categories in the survey conformed to the areas that were
the focus of the research - health, transport, welfare benefits and social
care. (We also included the category of “other” in the survey to capture
unspecified services.) We found that the respondents offered a wide
variety of services and often more than one service. The responses are
presented below.

                       Services Provided

                       Health         18.2%

                       Transport      9.4%

                       Welfare        21.4%
                       Benefits

                       Social Care    15.7%



5.7 As the responses indicate, the majority of organisations provided
welfare benefits advice (21.4%). This was followed by organisations
providing health services (18.2%), social care (15.7%) and transport
(9.4%). As well as the specific services cited above, in relation to the
‘other’ services provided outside of those categories, the majority of
organisations that responded said that they also provided services such
as housing, advocacy and advice, immigration advice, links with GP’s,
capacity building, employment support, office space, support to victims
of crime and befriending schemes.



5.8 The interviews with borough providers confirmed the results of the
survey overall, demonstrating a very high reliance on partnership work to
signpost people to relevant services. However, we contend that there is
a need for more evidence to investigate how signposting works for
particular disabled BMER disability groups and to ask whether disability
is or is not taken into account in terms of signposting clients.
                                                                        78
Furthermore, it is important to look further at the measures of success
and the triggers that are in place to assess when clients’ needs are not
being met and what recourse there have in that situation.

Most common forms of disability encountered by organisations

5.9 The survey asked voluntary organisations to describe most
common impairment types amongst their clients. Just under half (33
respondents) answered this question out of 63 in all. We specified the
following impairment types: mobility impairment, blind and partially
sighted, Deaf and hard of hearing, mental health support needs, learning
difficulties and long-term health conditions. The responses are
presented below.

            Disability and Impairment types

            Mobility Impairment       5.6%

            Blind/Partially Sighted   8.1%

            Deaf/Hard of Hearing      4.4%

            Mental Health Support     8.8%
            Needs

            Learning Difficulties     5%

            Long-Term Health          6.9%
            Conditions



5.10 As the table above illustrates, the most common form of disability
     and impairment encountered by providers working with clients was
     mental health support needs (8.8%) and sight impairment (8.1%).
     This was followed by long-term health conditions (6.9%), learning
     difficulties (5%) and Deaf/hard of hearing (4.4%). However, we
     must stress that the response rate to this question was low (under
     50% of respondents). There may be a number of reasons for the
     low response rate, such as an inability to categorise and record
     different forms of disability or a discomfort with the question.

                                                                           79
5.11 The borough providers whom we interviewed in greater detailed
     responded differently. They stated that they encountered all
     impairment types, because of the wide range of services that they
     provided to their local community.



Key barriers experienced by BMER groups accessing services

5.12 The survey asked organisations and borough providers to specify
the key barriers which prevented BMER disabled people from gaining
access to services. We specified the following barriers: language, the
cultural competence of organisations, appropriate formats, the cost of
services and ‘other’. The voluntary sector respondents to this question
offered a variety of responses which included one or more than one key
barrier. The following table sets out the responses.

                      Key Barriers

                      Language          24.5%

                      Cultural       15.1%
                      responsiveness

                      Appropriate       10%
                      formats

                      Cost of           9.4%
                      services



As the table above illustrates, the majority of voluntary organisations
identified language or cultural appropriateness as the most common
barrier to accessing services (24.5%). This was followed by the cultural
responsiveness of organisations providing services (15.1%), the
accessibility of formats (10%) and the cost of services (9.4%).




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5.13 As well as the specific barriers cited above, the organisations that
participated in the survey also elaborated on this under the ‘other’
category, stating that transport and the cost of transport was a major
accessibility issue for disabled BMER groups. One organisation also
stated that consultative meetings held by statutory agencies were often
held in areas in which BMER groups did not live and that this therefore
exacerbated the accessibility issue.

A recurring theme among the organisations surveyed was the inability of
disabled BMER groups to gain access to services, because they did not
know that the services existed in the first place. A small number of
organisations cited barriers to the labour market which had a knock-on
effect in terms of income. This was seen as a major barrier, particularly
by refugee communities.

Other issues that were cited by the majority of respondents to the survey
included the availability of translated material; the capacity of
organisations to facilitate the accessibility of BMER groups to services
because of their lack of capacity to do targeted outreach; the lack of
trained signers in diverse community languages and a lack of awareness
among BMER groups about whether or not they had a disability, as well
as a reluctance to define themselves as disabled.

5.14 Many respondents raised the issue of accessible transport, which
became a recurrent theme in the research.

As one interviewee from Taylor Road Day Centre in the London Borough
of Merton remarked:

‘With old age one may have reduced mobility, so, without transport to
take them to appointments, they could lose out. I have this experience
with an elderly lady linked with Taylor Road. After personally visiting her
with a representative from Age Concern, to help her fill in forms and
apply for help with her immobility, she was offered an appointment at the
Occupational Therapy Assessment Centre, All Saints Day Centre, but
since they would not provide transport, I had to drive her there myself
(London Borough of Merton - Taylor Road Day Centre).



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5.15 Many of the borough providers interviewed also raised the issue of
the cultural responsiveness of staff and services. They felt that there
was a lack of understanding and awareness of those impairments which
disproportionately affected BMER communities, and a lack of cultural
sensitivity among frontline staff.

We raised the issue of cultural beliefs being a barrier to service in some
interviews with the borough providers and asked how it might be
compounded by other barriers such as language, accessible transport
and disability, creating a higher barriers as a result. The following
remarks from our interviews illustrate some of the problems, both from a
provider’s point of view and from that of potential recipients:

‘...clients often complain of frontline workers having poor knowledge of
conditions such as Lupus or Sickle Cell (Croydon – Outreach Service).

‘In my experience of managing this service, often cultural beliefs can be
a stigma and a barrier for people taking up services. Obviously if
someone’s first language isn’t English sometimes buying in interpreters
or sending out letters in another language can sometimes take a little
longer. [Some] service users [who] are profoundly deaf and don’t know
British sign language. It may be that gestures have to be used...’
(Croydon – Sensory Service).

‘[Problems include] Access in terms of communication and language
barriers, proper advice. [and] transport in Redbridge [though] is quite
good [but] there are issues around transport and the cost of it. Also
because ethnic groups are not very forthcoming with accepting disability
it becomes a problem. It is a social stigma [and] especially around
children with [a] disability’ (Redbridge Welfare Benefits Team).




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Key barriers faced by organisations in providing services

5.16 The survey asked organisations to specify what barriers they
considered particularly difficult in the course of delivering services to
BMER disabled people. We specified financial issues, the provision of
information, the attitudes of other services providers and ‘other’ barriers.
The respondents to this question offered a variety of responses, most of
which included one or more key barrier. The responses are set out
below.



               Key Barriers

               Financial                26.4%

               Information              7.5%

               Government policy        3.7%

               Attitudes of other       4.4%
               service providers



5.17 As the table above illustrates, 26.4% of voluntary organisations
said that finance is the most significant barrier in terms of their ability to
facilitate or provide access to services for disabled BMER groups
(26.4%). The survey took place during the period of the Comprehensive
Spending Review. Most organisations said that financial uncertainty was
putting an inordinate amount of pressure on their ability to provide
specific services needed by BMER communities. These services
included translation services (which could cost in the region of £40 per
hour and upwards), targeted outreach to promote the take up of services
within BMER communities (particularly in specific groups defined either
by impairment type or geographical area). The cuts in public
expenditure have triggered the freeze of some projects in this area.



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One BMER organisation commented: “Just now (we are faced with)
problems…cuts, we are victims of cuts and it makes us think about our
future. We feel quite vulnerable because you think you are a second
class person and they don’t want to integrate with us, and you don’t feel
part of this country as well”.

Another organisation commented. ““We desperately need a property.
We operate from a Portakabin. We have asked the council for a
permanent place. We have equipment that needs maintaining and need
to raise money through tin shaking at stations. We are solely reliant on
volunteers.”

5.18 Respondents also cited the lack of provision of information about
the availability of services (7.5%). Some cited awareness of
employment rights and employment status among refugee communities,
information on what services can and cannot offer, and a lack of
information on dual language signers. Some said that organisations did
not have the resources to use dual language signers, even when
available, because of the prohibitively high cost at a time of financial
constraints.

Just over 4.% identified the attitudes of other service providers. was the
view that employers had actively colluded in the deportation of refugees
who had tried to enhance their pay and conditions.

Those who cited government policy (3.7%) as a constraint referred also
to eligibility around welfare benefits and housing eligibility as being a
significant barrier, as well as a lack of legislation to support BMER
communities.

5.19 Voluntary organisations surveyed raise other issues that did not fit
into the issues that we specified. Issues included the lack of local
authority structures to engage in meaningful consultation with BMER
communities, a lack of clarity around the national strategy for mental
health and the personalisation agenda which was affecting the long-term
future of some organisations. One organisation raised the issue of
attitudes to impairments such as HIV, which is still seen by some
communities as carrying a stigma. This resulted in reluctance by some to
access services, in its view.
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A Deaf and disabled people’s organisation commented: ““There was a
flurry of cases coming through. We were shocked at how people were
treated by staff in the benefit agency and housing. They have no
training and their attitude is border line racist, shocking and particularly
when individuals are asked to [disclose about] HIV [disclose] and
particularly as they have been asked to do so in a public place. It’s
shocking. They ask inappropriate questions which reveal their own
attitudes about someone’s background. [Lack of] training and lack of
oversight and lack of awareness of someone’s vulnerability, of what
one’s going through and in the process of going through and what
refugees actually go through.”

Another interviewee observed: ““Added to the confusion is how different
providers adopt their own regulations about entitlement and increasingly
are charging for their services for instance GPs, that they often do not
know they have discretion to treat people. Instead they are requesting
that refugees bring their passport as proof of IS which is rubbish. There
is a real fear that information will be passed on and health care services
will pass on information and therefore refugees do not want to present
and although it is difficult to be certain but anecdotally this is why so
many present late in terms of HIV”.

5.20 The issues rose in the survey broadly corresponded to those
raised in the interviews with the borough providers. The borough
providers raised the critical issue of the competition between groups
which had secured public funds and those who had not. A number also
raised the issue of the complexity of the current eligibility criteria for
different services. This reflects the strategic partnership relationship that
most borough providers have with the voluntary sector. This gives them
the added advantage of understanding the front line delivery issues,
developing market intelligence on what works and for which BMER
groups, and to a certain extent, sharing in the concern for the future of
delivery organisations on which they have come to rely.




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Data collection and use

5.21 Data collection on disabled BMER communities and their
experiences of services is, indeed, variable and sporadic across London.
Some boroughs, such as the London Borough of Redbridge and the
London Borough of Croydon, are investing by developing initiatives to
begin the systematic collation of data. Others are making only a limited
investment, particularly those boroughs with relatively small BMER
populations). This underlines the need for this research and the need to
focus on credible and comparable forms of data collection. The
following comment exemplifies this need:

‘We only hold data that is required for the purpose of determining
entitlement to Housing and Council Tax benefit. Whilst we capture the
ethnicity of all our clients this is not in relation to disabled BME and
refugee Londoners’ (London Borough of Harrow - Housing Benefit and
Council Tax).

A number of boroughs that participated in the research spoke of a range
of initiatives that were being introduced to start the process of systematic
collection of data on the needs of disabled BMER groups. These
boroughs were beginning to think about the new equality legislation and
were considering the implications of this for data collection. They were
adopting a multi-stranded approach, bringing together the experiences
of disabled BMER groups from different parts of the organisation, using
newly developed information systems and database management
processes.

Borough providers also raised questions about data collection and its
use in their more detailed interviews. Some raised the key issue of how
to quantify the number of disabled people in a particular area, as they
only had figures for those who engaged with services. They said that this
only presented a partial view.




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5.22 The voluntary and community sector hold a considerable amount
of qualitative data. This is invaluable from a service planning and service
delivery perspective. However, there is a paucity of quantitative data.
Some boroughs deploy ethnic monitoring data in order to understand the
needs of BMER communities, as well as looking at the Joint Strategic
Needs Assessment for each PCT and data provided through language
support access. Others collect data as part of their equality impact
assessment around services. This focussed on the number of BMER
groups presenting at services, the number of people receiving services,
and how valuable the service has been. There was a feeling that data
collection needs to be better, as illustrated in the following comment:

‘We need to get better at gathering data from organisations that we
commission services from, for example, from advisers to particular
communities and we need to get better at getting this data’ (London
Borough of Waltham Forest).

A BMER organisation commented: “Small voluntary organisations need
skills in conducting small scale research within their local communities,
particularly for funding application purposes.”

5.23 Although different borough services collate different types of data
on equality, very few then bring data together at a corporate level. This
process would allow them to assess the strategic implications for the
future of service design and the delivery process to targeted
communities. Strong leadership on equality is often coupled with a
variety of interventions used to drive service improvements, staff
performance and attitudinal change. Examples cited included training to
front line staff on disability and equality as well as inviting refugee
organisations to share their experiences of the services. In some
boroughs with a low number of BMER communities there was a clear
commitment to raising equality standards, monitoring service impact and
understanding service user trends, (around, in particular, why certain
groups are over or underrepresented in certain service areas).



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5.25 The majority of voluntary organisations that participated in the
survey stated that they collected data systematically and were able to
state clearly how date were used to inform their services through advice
and information updates.

Grassroots voluntary organisations seem able to deploy data for service
delivery relatively swiftly, perhaps reflecting their campaigning
backgrounds, and their understanding of the need to respond to the
needs of an at risk group in a timely manner. Some organisations did not
collect data on the categories focussed on in our research (for instance
on disability, but not on race or migration status). They felt that the
research project had offered them a valuable opportunity to review their
methods of data collection and monitoring and to identify ways in which
it could be improved.

5.26 Data collection and the use of data are highly political and
sensitive issues for groups such as asylum seekers and refugees. The
lack of trust and control that they can feel can present significant hurdles
to accessing services. One organisation spoke at some length about the
challenges of collecting data on asylum seekers, because of the
evolution of immigration policy and legislative landscape.

The changes to benefit eligibility and entitlement have led to a drop in
the numbers of refugees who are approaching services. It is, therefore,
more difficult to retain accurate data on those communities. Some fear
that they are more likely to become concealed, or even invisible to front
line services. Some members of one refugee forum meeting attended
by the researchers were concerned that if specific services that they
currently attended closed, data held by them might be transferred to
other organisations in which they had no confidence (or, indeed, against
which they had even campaigned in the past).

5.27 A number of boroughs that participated in the research spoke of a
range of initiatives that were being introduced to start the process of
systematic collection of data on the needs of disabled BMER groups.
These boroughs were beginning to think about the new equality
legislation and were considering the implications of this for data
collection.

                                                                          88
They were adopting a multi-stranded approach, bringing together the
experiences of disabled BMER groups from different parts of the
organisation, using newly developed information systems and database
management processes.

5.28 Although different borough services collate different types of data
on equality, very few then bring data together at a corporate level. This
process would allow them to assess the strategic implications for the
future of service design and the delivery process to targeted
communities. Strong leadership on equality is often coupled with a
variety of interventions used to drive service improvements, staff
performance and attitudinal change. Examples cited included training to
front line staff on disability and equality as well as inviting refugee
organisations to share their experiences of the services. In some
boroughs with a low number of BMER communities there was a clear
commitment to raising equality standards, monitoring service impact and
understanding service user trends, (around, in particular, why certain
groups are over or underrepresented in certain service areas).

Tools and resources needed

5.29 The survey invited respondents to indicate the resources that they
would find valuable including disability impact assessment toolkits,
information on eligibility, information on sources of support, more
accessible formats and specialised briefings. We also included open-
ended questions on tools and resources that might be valuable in work
with BMER communities, ways in which current tools and resources
could be strengthened and an open-ended ‘other’ question. Forty-two
out the 63 respondents answered this section. Many respondents
identified a number of tools and resources they would find valuable.




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The following table sets out the responses.



         Useful tools and resources

         Disability impact            9.3%
         assessment toolkits

         Information on eligibility   10%

         Information on sources of    10.7%
         support

         More accessible formats      10%

         Specialised briefings (for   7.5%
         example the law)



5.30 As the table above illustrates, a number of organisations identified
information on sources of support as a resource that they would find
valuable (10.7%). This was followed by information on eligibility (10%)
more accessible formats (10%) disability equality impact assessment
toolkits (9.3%) and specialised briefings on, for example, legal issues
(7.5%).

5.31 Individual organisations also identified tools and resources that
have already proved valuable in working with disabled BMER
communities. They included resources provided by the Royal National
Institute for the Blind (www.rnib.org.uk), particularly on assistive
technologies, information on eye conditions, contacts such as
local/county blind societies, adaptable equipment to assist with everyday
life, guidelines on making environments accessible (such as
signage/colour contrasting), and publications such as Read to Write.




                                                                        90
As well as these specific resources, organisations identified more
general resources, including outreach strategies for work with BMER
communities; general guidance on engagement and best practice in
working with BMER communities; special computer equipment for
disabled BMER people; more support groups so that disabled people
could go out and participate in activities; language lines; accessible
premises; peer mentors within specific services; translated information
and a greater variety of services to reflect the diversity of the BMER
population.

One organisation said: ““The key thing is not to assume people in the
sector are in the know. [What] front line workers need..[to] make sure
that there are ways of reaching people who are stuck because of
mobility, stigma, fear, literacy, women who do not go to mixed meetings
or venues from particular backgrounds, access is not just about writing
and producing stuff”.

5.32 Individual organisations and borough providers also suggested
ways in which resources could be strengthened. These included the
secondment of workers between community organisations; more
resources for interpreters; specific ring-fenced funding for working with
BMER communities within tendering processes; more accessible
premises and staff; more tools in BSL; co-ordinated work and joint
platforms for campaigning tools; greater marketing to ensure that BMER
workers in disabled people’s organisations are aware of services and
more translation and face-to-face contact with BMER disabled
communities. Some respondents also commented on the need for
toolkits and resources to be made available in a variety of accessible
formats and community languages, the provision of opportunities for
networking, resources centred on training for frontline mental health
workers working with disabled BMER communities and a checklist for
events to ensure that they are accessible.




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Another interviewee suggested “empowering people from those
communities to act as peer models, advocates” and training them to help
them understand their rights, adding that service users needed to
“become mentors to take that on and insist on their own rights and the
rights of other people”.

Additional issues in relation to accessibility

5.34 We also included a section where respondents could make
additional comments on the barriers to services that disabled BMER
people might experience, or other issues that they felt should be
considered in the context of access to services. We also asked borough
providers about this area in our in-depth interviewed. Just 14 of the 63
respondents to the survey made additional comments. Most
concentrated on the issue of funding for the voluntary and community
sector, within the context of declining resources in the public sector. We
set out their concerns below on a point by point basis below:

Funding

5.35 The requirement for hands-on assistance in research and
conducting small scale research within their local communities to
support funding applications, with some specifically asking what
assistance Inclusion London could provide.

Assistance for older BMER people

5.36 The provision of assistance for elderly BMER people in the home
to enhance their life circumstances should be a priority, particularly as
older people are more likely to have some form of disability or
impairment.




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Employment assistance

5.37 There is a need for disabled BMER groups to be trained as job
coaches working specifically within their own communities to provide
support and assistance targeted to the particular needs of communities.
Organisations highlighted the lack of affordable and accessible office
accommodation for disabled people, with some raising issues such as a
lift in a rented office being out of action for more than three months.

Representation at benefit assessments

5.38 Organisations working with clients and navigating through changes
in benefits stated that it is critical that disabled BMER clients have
proper representation at assessments to overcome the added barrier of
communication and to ensure that the case for assistance is presented
properly. Moreover, it is important that an advocate attends with them
rather than only advising, as the lack of proper representation can
impact adversely on an assessment.

Training for organisations working with disabled BMER
communities

5.39 Some said that organisations working with BMER communities are
failing to represent the broad spectrum of diversity in London and failing
to engage effectively with BMER communities. The disability agenda
must take account of cultural and demographic changes in London (and
indeed across the UK). There is a critical need for all organisations
working with disabled people to ensure that their staff receive diversity
training and that concerted efforts are made to ensure that people from
BMER communities are recruited as staff and as members of
management committees.




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Dual language signers

5.40 The issue of working with communities who use sign language in
other languages or who need interpretation services among those who
have English as a second language needs to be addressed. A major
challenge in addressing this is seen to be the shortage of signers and
other languages, coupled with the prohibitive costs of funding to engage
signers and/or interpreters which many struggling organisations
representing BMER communities cannot meet.

Further dialogue

5.41 Organisations working with disabled BMER Londoners have
offered to engage in an ongoing dialogue with Inclusion London. This
could be a means of identifying new needs, targeting existing ones,
soliciting help and advice in working with disabled BMER communities
and addressing their organisational development needs. Some
organisations said that Inclusion London could provide them with
important campaigning skills and could co-ordinate immediate
responses to consultations at a regional level on issues impacting on
disabled BMER groups.

National relevance of the survey questions

5.42 Organisations with a national focus (but which also focussed
specifically on London) also stated that the questions posed in the
survey about the barriers experienced by disabled people had relevance
in other cities outside of London.




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Section Six: Conclusion

This research has provided evidence to demonstrate that a large
proportion of disabled BMER communities are not accessing critical
services and this is due to a number of barriers in terms of the way
services are provided, as well as attitudinal barriers. This research can
be used to inform the development of policies that take account of the
particular experiences and needs of BMER groups, and the provision of
services that are appropriate to their particular needs and experiences,
frontline practice and the targeting of services.




                                                                        95
Recommendations

The following recommendations are designed to meet the overall
objectives of the research, as outlined at the beginning of this report
(Para. 1.1). These were to research the profile of disabled BMER
communities and barriers to the take up of services; produce a map of
frontline organisations that assist people from the target communities in
accessing services; identify best practice and also key problems of
frontline organisations and of borough service delivery organisations;
and develop a Good Practice Guide that will aid frontline organisations.

The recommendations presented below build on the key messages that
emerged from research. They are structured to relate to key stakeholder
groups who should take responsibility for moving the issues identified
forward. They are not listed in a priority order.

Local authority providers

        Work to improve systems of data collection that include
         identifying key information on the profile of and needs of
         disabled BMER communities in relation to key services.

        Share good practice examples of data collection methods
         across the various London boroughs to illustrate how these
         approaches can fully embrace disability, race, and refugee
         status.

        Use the Good Practice Guide to publicise and share data on
         disabled BMER communities in an accessible format for wider
         frontline delivery partners.

        Ensure that strategic delivery plans recognise and take account
         of the specific needs of disabled BMER groups (for example,
         our research found that NHS London’s Strategic Plan did not
         recognise or take account of the needs of disabled BMER
         groups).




                                                                        96
 Develop and encourage a better awareness and understanding
  of existing and emerging disabled BMER organisations, and the
  important role that they play as equal partners in the provision
  of services targeted at disabled BMER groups.

   Work with specialist equality trainers to develop specific training
    programmes for frontline delivery staff and commissioners. The
    training should raise awareness of cultural bias and its impact
    on access to services among disabled BMER communities
    accessing mainstream services.

   Provide information on how services to disabled BMER
    communities are commissioned.

   In consultation with BMER communities, provide practical
    training and support to commissioners of services to focus on
    redesigned (redesigning?) services to cater for factors including
    migration, race and gender on the lives of disabled BMER
    people, and how this can contribute to the building up of robust
    quantitative evidence based on communities’ experiences of
    accessing services.

   Monitor and publicise the way in which decisions on community
    care assessments are made in terms of the services provided
    to disabled BMER people/groups, and the discretionary use of
    social care charges.

   Develop and encourage a better understanding of existing and
    emerging disabled BMER organisations and the important role
    that they play as equal partners in the provision of services
    targeted at disabled BMER groups.

   The Inclusion London Good Practice Guide encourages the
    employment of bi-lingual and disabled staff to facilitate greater
    access to services among disabled BMER groups.




                                                                     97
      Develop cost effective and innovative approaches to addressing
       the prohibitive financial costs of meeting the basic access
       requirements of disabled BMER communities to Deaf and
       disabled people’s organisations (DDPOs), including bi-lingual
       translation services, particularly in languages in addition to
       English.

        Work with strategic borough and regional partners and BMER
         to provide translated and accessible material about changes in
         the eligibility criteria for social care services, and to raise
         awareness about the need for interpreters in diverse
         community languages.

        Ensure that new service developments are informed by the
         needs of disabled BMER users. For example, that transport
         developments are informed by the needs of disabled BMER
         users and that they are meaningfully consulted on changes in
         transport policy affecting their day-to-day experiences, such as
         the increasing cost of travel or cuts in the Taxicard.

        Ensure that data is used to positively influence cross-London
         strategies so that they address the needs of these
         communities. For example, monitor and feed into the work of
         the London Skills and Employment Board’s strategy: Recession
         to Recovery target to ‘reduce the gap in employment within
         London for BAME disabled people and lone parents from
         19.4% to 16%’ by 2014.

Frontline Deaf and disabled people’s organisations

      Use the Inclusion London Good Practice Guide to develop easy
       to use data capture methods that encourage better data
       collection and monitoring of disabled BMER users, and use this
       to inform strategies that encourage better access to and take-up
       of services.

      Adopt the key Good Practice Guide top tips to working
       collaboratively with BMER organisations.

                                                                        98
      Access training to help you undertake the recommendations in
       this report. For example, the LVSC 2011 training programme on
       Care and Support, Changes in the Sector, Data Protection, and
       Finance and Fundraising.

      Provide training to commissioners of services to focus on
       redesigning services to cater for factors including migration,
       race and gender on the lives of disabled BMER people, and
       how this can contribute to the building up of robust quantitative
       evidence based on communities’ experiences accessing
       services.

      Monitor, or work with others to monitor, the implementation of
       strategies such as Transport for London’s Disability Equality
       Scheme and the Mayor’s Transport Strategy 2010, and use
       consultations to raise awareness of the needs of disabled
       BMER communities and the attitudes of frontline staff employed
       in the public sector.

      Seek to influence the work of appropriate pan London public
       sector and service provider equality bodies, and make them
       aware of the needs of your communities. For example, the
       Transport for London Independent Disability Advisory Group.

Frontline BME and refugee organisations

      Access training to help you undertake the recommendations in
       this report. For example, the LVSC 2011 training programme on
       Care and Support, Changes in the Sector, Data Protection, and
       Finance and Fundraising.

      Seek to influence the work of appropriate pan London public
       sector and service provider equality bodies and make them
       aware of the needs of your communities. For example, the
       Transport for London Independent Disability Advisory Group.

      Adopt the Inclusion London Good Practice Guide which sets out
       how to work effectively with DDPOs and the wider voluntary
       sector.

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      Promote the monitoring of take up of services among disabled
       BMER communities and share evidence on the cultural and
       social practices of Deaf and disabled BMER groups, and
       cultural barriers that may exist to accepting disability status.

Infrastructure voluntary and community organisations

      Work with other voluntary and community organisations and
       borough providers to further develop credible and comparable
       forms of data collection on the needs of disabled BMER
       communities.

      Provide information and regular training to the wider voluntary
       and community sector delivering services on issues such as
       rights and entitlements, disability law, the use of interpreters,
       multiple impairments, and cultural, religious and gender issues.

      Share good practice by encouraging organisations to provide
       evidence on their experiences of disabled BMER groups, given
       the changing and mobile nature of communities.

      Work with frontline advice, information and guidance
       organisations to fully understand the highly political and
       sensitive provision of advice services. In particular, raise
       awareness about the lack of trust and control experienced by
       asylum seekers and refugees who access these services.

      Campaign to raise awareness and provide direct support to
       disability BMER groups, particularly those who are most
       vulnerable in being without recourse to public funds.

      Raise awareness of the important role played by carers and
       advocates, and collate and share good practice examples or
       stories where they have been actively engaged in removing
       access barriers for disabled BMER groups.




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 Publicly campaign to support the viability of frontline voluntary
  organisations providing critical services to disabled BMER
  communities that are most likely to be financially weakened by
  the current reduction in public expenditure and, therefore, at risk
  of immediate closure.

 Use the Good Practice Guide to provide support and training to
  frontline organisations to monitor across the equality strands of
  disability, race and other equality groups, and migration status,
  and use the evidence to contribute to improving frontline
  services.

 Work with DDPOs to strengthen their campaigning and
  advocacy role.

 Adopt the Good Practice Guide, top tips on partnership work
  and building capacity to strengthen relationship between
  DDPOs and BMER frontline delivery organisations.

 Work with other organisations to encourage better regional co-
  ordination of training and legal updates for refugee community
  organisations and community groups.

 Challenge mental health care services to tackle the higher rates
  of hospital admission and compulsory detention, the lack of
  awareness of and information about mental health services, the
  lack of access to appropriate language services, and
  institutional racism.

 Work with other disability campaigning organisations to address
  barriers experienced by disabled BMER group accessing
  mainstream health and social care services. This will include
  the complex systems for accessing help, language barriers, lack
  of linguistic and cultural competence within services, attitudes
  towards disability within BMER communities and institutional
  racism within health and social care agencies.


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      Widely publicise the impact of the changes from state-provided
       personalised care to means tested assessments.

      Monitor the London Health Inequalities Strategy 2010, and
       identify measures to encourage better monitoring of disabled
       BMER groups and ways to address barriers to appropriate
       health and social care identified in this report.

      Challenge the government’s policies that result in financial cuts
       to health, social care and welfare benefit and transport services
       to disabled BMER communities.

Inclusion London

      Work with partner organisations to raise awareness of prejudice
       against disabled people, racism and anti-migration policies.

      Publicise the evidence base on the types of impairments that
       BMER users present to frontline workers.

      Become a central resource for frontline organisations across the
       public, voluntary and community sectors.

Good Practice Guide/Resources

      This project has been tasked with developing a Good Practice
       Guide to aid the work of frontline organisations to better meet
       the needs of disabled people from the target communities.

The Inclusion London Good Practice Guide contains useful tips and
      resources on 6 key areas:

        Knowing your responsibilities towards disability communities;
        Knowing your disability BMER communities;
        Designing services to meet disabled BMER needs;
        Good data capture and monitoring systems and approaches;
        Building strategic alliances and partnerships;
        Building capacity and releasing potential.



                                                                         102
Appendix A

Further Reading



Alexander, Claire, Rosalind Edwards and Bogusia Temple, Access to
services with interpreters: user views (Joseph Rowntree Foundation,
2004)

Ahmad, Waqar, Aliya Darr, Lesley Jones and Gohar Nisar, Deafness
and ethnicity: services, policy and politics, (Joseph Rowntree
Foundation, 1998)

Chamba, Rampaul, Waqar Ahmad and Lesley Jones, Improving
services for Asian deaf children: Parents’ and Professionals’
Perspectives, (Bristol, Policy Press, 1998)

Clark, Heather, Helen Gough and Ann Macfarlane, ‘It pays dividends’:
Direct payments and older people, (Joseph Rowntree Foundation, 2004)

Chahal, Kusminder, Why are minority ethnic communities often ignored
in policy and practice responses? (Joseph Rowntree Foundation, 2004)

Connelly, Naomi, Lora Forsythe, Guy Njike, and Anya Rudiger, Older
Refugees in the UK: A literature Review, (Refugee Council, 2006)

Dench, Geoff, Michael Young and Kate Gavron, The New East End:
Kinship, Race and Conflict, (Profile Books, 2006)

El Ansari, Walid, Karen Newbigging, Carolyn Roth and Farida Malik,
‘The role of advocacy and interpretation services in the delivery of
quality healthcare to diverse minority communities in London, United
Kingdom’, Health and Social Care in the Community, 17,6, 2009, pp636-
646

Fazil, Q., P. Bywaters, Z. Ali, L. Wallace and G.Singh, ‘Disadvantage
and discrimination compounded: The experience of Pakistani and
Bangladeshi parents of disabled children in the UK’, Disability & Society,
17, 3, 2002, pp237-253


                                                                       103
Green, Ruby, Richard Pugh and Diane Roberts, ‘Black and minority
ethnic parents with mental health problems and their children’, Social
Care Institute for Excellence, Research Briefing 29, 2008

Harris, Jennifer, ‘All Doors are Closed to Us’: a social model analysis of
the experiences of disabled refugees and asylum seekers in Britain’,
Disability & Society, 18, 4, 2003, pp395-410

Hussain, Yasmin, Karl Atkin, and Waqar Ahmad, South Asian young
disabled people and their families, (Joseph Rowntree Foundation, 2002)

Jones, Adele, Dharman Jeyasingham and Sita Rajasooriya, Invisible
families: The strengths and rights and entitlements of Black families in
which young people have caring responsibilities, (Joseph Rowntree
Foundation, 2002)

Krugman, Paul, The Return of Depression Economics and the Crisis of
2008, (Penguin, 2008)

Narayanasamy, Aru, ‘Transcultural Mental Health Nursing. 2: Race,
Ethnicity and Culture’, British Journal of Nursing, 8, 11, 1999, pp664-
668.

Newbigging, Karen and Janice Lowe, Direct payments and mental
health, (Joseph Rowntree Foundation, 2005)

Roberts, Keri and Jennifer Harris, Disabled people in refugee and
asylum seeking communities in Britain, (Joseph Rowntree Foundation,
2002)

Singh, Becca, Making change happen for black and minority ethnic
disabled people, (Joseph Rowntree Foundation, 2005)

Skyers-Poorman Research and Consulting, Comparative Policy
Analysis, (Greater London Authority, 2008)

Skyers-Poorman Research and Consulting, Improving Commissioning
Processes: BME Mental Health Service Users in Lambeth and
Southwark (London Development Centre, 2006)

Skyers, Sophia, Migrant Women, Barriers to Employment and Training,
(EU Interreg, London Borough of Ealing, 2008)
                                                                           104
Szczepura, A., ‘Access to health care for ethnic minority populations’,
Postgraduate Medical Journal, 81, 953, 2005, pp141-147

Temple, Bogusia, Alys Young and Joanna Bolton, ‘ They know where to
find us...’ Service providers views on Early Support and minority ethnic
communities’, Disability & Society, 23,3, 2008, pp223-234

Vernon, Ayesha, User-defined outcomes of community care for Asian
disabled people, (Joseph Rowntree Foundation, 2002)

Wilson, Melba, Delivering Race Equality in Mental Health Care: A
Review, (Department of Health, 2009)




                                                                          105
Appendix B

Research methodology

The research was led by Sophia Skyers, Janet Poorman and was
supported by Sasha Callaghan and Bogusia Temple, who collectively
formed the research team. In addition, Andrew Little and Anne Kane of
Inclusion London supported the research and together with the
researchers formed the project team. The team agreed the scope of the
research, developed and implemented the project plan.

Literature and policy review

The first stage of the research involved a literature and policy review in
order to develop a fuller understanding of some of the issues in relation
to the BMER communities. This involved a multifaceted approach
including literature searches via the Web of Knowledge and web-based
searches including those of the Joseph Rowntree Foundation, Disability
Alliance (UK), the Refugee Council, the Information Centre about
Asylum and Refugees and the Social Care Institute of Excellence.

We also collected quantitative data from a range of secondary sources
in relation to BMER communities, both national, and London specific.
This enabled the research to begin the process of profiling disabled
BMER groups and also started to identify gaps in data, thus laying the
foundations for subsequent stages of the research.

A series of interviews with policy-makers, practitioners, and
representatives from the voluntary and community sector were also
undertaken to explore some of the issues arising from the policy and
practice review. This highlighted important issues around which a series
of questions were developed to inform a semi-structured survey and a
wider call for evidence.




                                                                        106
The fieldwork

The research mapped a wide range of BMER voluntary organisations
representing BMER communities, particularly those who are hard to
reach, for example the Francophone community in Southwark who have
a low level of reliance on services, and are therefore often overlooked.
This was achieved by engaging with a range of infrastructure
organisations and other organisations, as well as connecting directly
with BMER communities and BMER organisations. The fieldwork yielded
a database of voluntary organisations.



The researchers also undertook a survey of disabled people’s
organisations and organisations representing disabled BMER groups.
There were 63 responses; these were from a variety of organisations,
some of which focused their activities on a particular borough or a
number of boroughs, some of which were London-wide, and a few that
had a national focus.



This was supported by qualitative interviews with borough providers
drawn from across London, resulting in 13 responses.




                                                                      107
Appendix C

Survey Questions

Skyers-Poorman Research and Consulting have been commissioned by
Inclusion London to undertake an innovative quantitative research
project on the needs of disabled BME and Refugee people. Inclusion
London is the pan-London Deaf and Disabled Peoples’ Organisation
which provides policy, campaigning and capacity building support for
Deaf and disabled people's organisations in the capital. The purpose of
this research is to better understand the needs of disabled Black,
refugee and minority ethnic (BMER) communities in London and the
organisations supporting them to access core services and to develop
tools to increase the skills of frontline organisations and address the
barriers to accessing services. The results will enhance the skills of
local, frontline organisations to help improve access to services and
increase the representation and voice of people from the target
communities.



SECTION A: ORGANISATION DETAILS

Name of organisation

Contact Person

Address

Telephone

E-mail

Website

What services does your organisation provide?

Who do you provide services to?

Which areas of London do you cover?



                                                                     108
SECTION B: SERVICES AND INFORMATION

Do you provide services in any of the following areas for disabled black,
minority ethnic and refugee communities? (Please tick all that apply)

Health

Transport

Welfare Benefits

Social Care

Other (please specify)

How many disabled black, minority ethnic Londoners did your
organisation work with in 2009?

Race/ethnicity

Gender

Age

How many disabled refugee Londoners did your organisation work with
in 2009?

Race/ethnicity

Gender

Age



What are the most common forms of disability and impairment among
black and minority ethnic and refugee communities that your
organisation works with?

Mobility Impairment

Blind/Partially Sighted

Deaf/Hard of Hearing
                                                                       109
Mental Health Support Needs

Learning Difficulties

Long Term Health Conditions

Other



What are the key barriers for disabled black, minority ethnic and refugee
communities accessing services?

Language barriers

Cultural competence of services

Appropriate format for Information about eligibility

Cost of services

Other (please specify barrier and for which sector)



What are the key barriers for your organisation in terms of providing
services to black, minority ethnic and refugee disabled people?

Financial

Information

Government Policy (please specify)

Attitudes of other service providers (please specify)

Other (please specify barrier and for which sector)

SECTION C: TOOLS AND RESOURCES

Are there any tools and resources that are valuable in working with
disabled black, minority ethnic and refugee communities?




                                                                        110
Are there any ways in which current tools and resources that you use
could be strengthened?

Are there any resources that are not currently available that you would
find valuable to assist your work with disabled black, minority ethnic and
refugee communities?

Disability impact assessment toolkits

Information on eligibility

Information on sources of support

More accessible formats

Specialised briefings (for example on the law)

Other (please specify)

SECTION D ANY ADDITIONAL COMMENTS

Please provide us with any further comments that you would like to
make




                                                                        111
Appendix D

Skyers-Poorman Research and Consulting

Topic Guide for Provider Organisations



Name of organisation



Contact Person



Address



Telephone



E-mail



What service does your organisation provide?



What client group or groups do you provide services to?



What are the key barriers experienced by disabled black and minority
ethnic Londoners accessing services? (focus on transport, health and
social care, welfare benefits)



Are there any other barriers to services experienced by disabled BME
and refugee Londoners that you would like to discuss not identified in
the sectors above?

                                                                         112
What issues do you face as an organisation in addressing the needs of
disabled BME and refugee Londoners?



What types of data do you collect in relation to disabled people?



How do you use the data collected to improving services to BMER
groups?



Do you have/know of any tools and resources that are valuable in
working with disabled BME and refugee Londoners?



How effective are the resources? (probe for gaps in existing resources
as well as gaps in terms of resources needed but not currently available)



Is there anything not covered in the above in relation to disabled BMER
Londoners that you would like to raise?




                                                                      113

				
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