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Improving support for black disabled peopleLessons from community organisations onmaking change happenBecca SinghA review of four community organisations providing supportto black disabled people.This study reviews the JRF’s Making Change Happenprogramme, which provided a year’s funding to fourgrassroots development organisations with a track record inproviding support to black disabled people. The report setsout the learning that emerged from the four developmentprojects. It includes: overviews of the four development projects; learning and common themes, with boxed illustrationsfrom the projects; detailed case studies from two of the projects; practical pointers and suggestions for voluntary andcommunity organisations wishing to improve support toblack and minority ethnic disabled people; and somequestions for funders and service providers to consider.The report will be of interest to both policy makers andpractitioners in the field.
This publication can be provided in alternative formats,such as large print, Braille, audiotape and on disk.Please contact:Communications Department, Joseph RowntreeFoundation, The Homestead, 40 Water End, YorkYO30 6WP.Tel: 01904 615905. Email: info@jrf.org.uk
Improving support for blackdisabled peopleLessons from community organisations onmaking change happenBecca Singh
The Joseph Rowntree Foundation has supported this project as part ofits programme of research and innovative development projects, which ithopes will be of value to policy makers, practitioners and service users.The facts presented and views expressed in this report are, however,those of the author and not necessarily those of the Foundation.Joseph Rowntree FoundationThe Homestead40 Water EndYork YO30 6WPWebsite: www.jrf.org.uk Becca Singh 2005First published 2005 by the Joseph Rowntree FoundationAll rights reserved. Reproduction of this report by photocopying orelectronic means for non-commercial purposes is permitted. Otherwise,no part of this report may be reproduced, adapted, stored in a retrievalsystem or transmitted by any means, electronic, mechanical,photocopying, or otherwise without the prior written permission of theJoseph Rowntree Foundation.ISBN 1 85935 390 8ISBN 1 85935 391 6(paperback)(pdf: available at www.jrf.org.uk)A CIP catalogue record for this report is available from the British Library.Cover design by Adkins DesignPrepared and printed by:York Publishing Services Ltd64 Hallfield RoadLayerthorpeYork YO31 7ZQTel: 01904 430033; Fax: 01904 430868; Website: www.yps-publishing.co.ukFurther copies of this report, or any other JRF publication, can be obtainedeither from the JRF website (www.jrf.org.uk/bookshop/) or from ourdistributor, York Publishing Services Ltd, at the above address.
ContentsAcknowledgements1 Introduction and contextA programme of research and developmentWhat does research tell us about the experiences ofblack disabled people?Legislative and policy context, including recentdevelopmentsSummary2 Overview of the four development projects in theMaking Change Happen programmeHelping Each Other, Helping Ourselves, run byTassibee in RotherhamROOOTS, run by People in Action in LeedsService Plus, run by ISCOM (International SomaliCommunity Trust), London Borough of HackneyWaltham Forest Disabled People’s and Carers’Partnership, run by EQUALITIES, London Boroughof Waltham Forest3 Emerging lessons from four grass-roots projectsRecognising and celebrating multiple identitiesFaith and religionLanguageChallenging myths and prejudicesShared and separate spaces for disabled people and carersBuilding individual and organisational capacities Through increasing the number of skilledvolunteers and workers Through training Through networking Through data collection and monitoringvii11357881012141717222223242626262828
Paying project participants and volunteersMeeting people’s basic needsWorking under difficult circumstancesSupportive alliesFundingSummary4 Case study 1 ROOOTS: black people with learningdifficulties training service providersIntroductionAimsTimetableProcessWhat are the training sessions for service providersand organisations like?OutcomesLearning from this project5 Case study 2 Helping Each Other, Helping Ourselves:self-help groups supporting Pakistani Muslim ing from this project2930313233353636373738404143444445454648516 Summary and pointers for practical actionSome practical pointers for any organisation working toimprove support for black disabled peopleQuestions for organisations, funders and serviceproviders56References66Appendix: Methods68vi5358
AcknowledgementsI would like to thank Nasa Begum, Birgit Brandt, Ratna Dutt,Maureen Grant and Bala Thakra for all their support andencouragement. The work could not be done without theco-operation of all the projects in the Making Change Happenprogramme: ROOOTS (and the staff at People in Action),Tassibee, ISCOM and EQUALITIES, and I thank them for theirhard work in making this research possible. In addition, LesleyJones, Audrey West, Emma Stone, Marcus Sly and EleanorJames ensured that the work was completed successfully andmy heartfelt thanks go to them.vii
1 Introduction and contextThis chapter introduces the Joseph Rowntree Foundation’sMaking Change Happen programme, which aimed to generatepractical and positive information on how to improve support toblack disabled people. It also includes a short summary of‘what we know from research’ and relevant policydevelopments.A programme of research and developmentOver the past decade, the Joseph Rowntree Foundation (JRF)has supported several research projects about the lives andexperiences of black disabled people, children and theirfamilies in the UK. Some of the main findings from this workhave recently been summarised in a short report for theFoundation on ‘Experiencing ethnicity: discrimination andservice provision’ (Chahal, 2004; see below).The most salient responses to this research were that: most research tended to focus on poor practice rather thangood practice (researchers reported difficulties findingenough good-practice examples) there was a demand for action rather than yet moreresearch.These views were commonly held by black disabled peoplewanting support as well as professionals from statutory andvoluntary organisations providing services for this client group.1
Improving support for black disabled peopleBlack communities are tired of taking part in researchthat asks them what they want from services, only tofind nothing happens until five years later when theyare asked the same questions over again.(Flynn, 2002)On the basis of this evidence, the Foundation set up MakingChange Happen, a time-limited programme that provided 12months’ funding to four grass-roots development organisations.These had a track record in providing support to black disabledpeople. This focus potentially offered more positive andpractical learning to others hoping to improve support to thisdiverse and often disadvantaged group.To make this learning available to a wider audience, theFoundation funded a small additional project: Learning theLessons. It is this project that forms the basis for this report.Learning the Lessons was designed to work alongside thedevelopment projects to identify common themes and usefullessons for others. It was not intended to assess the intrinsicworth of each project, nor to evaluate their success in meetingtheir objectives, except where lessons could be learned toimprove support. Projects in the Making Change Happenprogramme were required to participate in Learning theLessons as part of their funding agreement with JRF. They feltthat it was useful to know that someone else was recording theproject, without making additional demands on staff. They alsofound it helpful to receive feedback from the researcher atdifferent times during the project. Learning the Lessons usedobservation, documentary evidence, participation andinterviews at different stages of each development project. Theillustrations in this report reflect the variety in quality andquantity of data collected.2
Introduction and contextThis report sets out the learning that emerged from the fourdevelopment projects. It contains: overviews of the four development projects learning and common themes, with boxed illustrations fromthe projects detailed case studies from two of the projects practical pointers and suggestions for voluntary andcommunity organisations wishing to improve support to blackdisabled people; and some questions for funders and serviceproviders to consider.Throughout the report, I have used the term ‘black disabledpeople’ in the same context that JRF used it in the call forproposals that led to these development projects. This uses theSocial Model of Disability to describe a disabled person assomeone with impairment, learning difficulty or mental healthdifficulty who is disabled by barriers in society. ‘Black’ describesa person from a minority ethnic community or with a minorityethnic racial identity who may experience discrimination basedon the colour of their skin or their cultural heritage.What does research tell us about theexperiences of black disabled people?A recent summary report for the Joseph Rowntree Foundationdraws together some of the main findings from theFoundation’s programme of research on and with blackdisabled people, children and their families (Chahal, 2004).3
Improving support for black disabled peopleParticular findings include: black service users felt mainstream services were ofteninappropriate for their needs and that services madeassumptions based on stereotypes and prejudice about whatthe needs of these users might be or what they might want toaccess the experience of racial discrimination and prejudice inmainstream service provision often meant that minority ethnicusers requested specialist, culturally competent services there were few black staff in mainstream services and someof the services had made little attempt to change this there was a general desire for more information aboutservices and entitlements from service providers. Forexample, very few disabled people had any knowledge ofdirect payment schemes (which make cash payments toindividuals to purchase personal assistance, chosen andcontrolled by them) religious and cultural identity was very important to manypeople from minority ethnic communities but it was rarelyresponded to by mainstream service providers common myths about informal family networks looking aftereach other should not be taken for granted. Althoughinformal support is available in certain circumstances, thiscannot be relied on people sometimes experienced discrimination and prejudicewithin their own community and faith groups the differences between the experiences of men and womenwere often sharper than the differences between differentethnic groups.4
Introduction and contextEvidence from research funded by JRF and others alsoindicates that: black disabled people have multiple identities and supportneeds. Their experiences have been described as ‘double’ or‘triple’ discrimination (e.g. as a black disabled woman) andas ‘multiple oppression’. Services aiming to support blackdisabled people must recognise the complexity of identityand subsequent support needs from the start in order to beeffective black disabled people routinely fall between organisationsand services focusing on disabled people and those focusingon minority ethnic communities disabled children and adults are frequently faced with lowexpectations of what they can do, and this in turn reducestheir own aspirations, self-confidence and expectations disabled people and their families want support that is timely,appropriate, accessible and flexible, designed to meet theirown needs and lifestyles, and delivered by people who askthem what their needs are and how best to meet these.Often, community organisations are better placed to meetthese needs.Legislative and policy context, including recentdevelopmentsSeveral recent policy developments have the potential to offer amore supportive framework for improving services to blackdisabled people and recognising the experience of multiplediscrimination.5
Improving support for black disabled peopleExamples of relevant policy developments include: Improving the Life Chances of Disabled People (PrimeMinister’s Strategy Unit, 2005): a joint report from the PrimeMinister’s Strategy Unit with Department of Work andPensions, Department of Health, Department for Educationand Skills and Office of the Deputy Prime Minister Fairness for All: A New Commission for Equality and HumanRights (Department of Trade and Industry, 2004) announcedthe Government’s plans to bring together the work of thethree existing equality commissions (Equal OpportunitiesCommission, Commission for Racial Equality and DisabilityRights Commission) Draft Disability Discrimination Bill (2005), which will amendthe Disability Discrimination Act (1995) and introduce a widerange of measures recommended by the Disability RightsTaskforce, including a new duty placed on the public sectorto ‘promote disability equality’. This will bring disabilitylegislation in line with the duties outlined in the RaceRelations (Amendment) Act (2000) Learning Difficulties and Ethnicity: A Framework for Action(Department of Health, 2004) takes forward the work of theSub-group on Ethnicity of the Learning Disability Task Force Delivering Race Equality in Mental Health Care: An ActionPlan for Reform Inside and Outside Services (Department ofHealth, 2005) sets out a five-year action plan for reducinginequalities in black patients’ access to, experience of andoutcomes from mental health services Inside Outside: Improving Mental Health Services for Blackand Minority Ethnic Communities in England (Department of6
Introduction and contextHealth, 2003) sets out the Department of Health’s plans to:reduce and eliminate ethnic inequalities in mental healthservice experience and outcome, including developing thecultural capability of mental health services; and engagingthe community through community development workers A New Vision for Adult Social Care (Wistow, 2004) reportedthe results of a survey undertaken for the Department ofHealth by the Social Care Institute of Excellence, which willfeed into a forthcoming Green Paper on the future of adultsocial care.SummaryEvidence from research suggests inappropriate, underresourced services, resulting in high levels of unmet needamong black disabled people in Britain. There is much that stillneeds to change. Recent and forthcoming legislative and policydevelopments will provide a much-needed supportiveframework within which such changes could take place. But, asalways, the question will be: what enforceable steps (withappropriate resources) will be taken to ensure that blackdisabled people benefit from such changes as much as whitedisabled people and their families?The findings of this report highlight concerns and strategiesabout equal access for black disabled people. Both communityorganisations and services users are involved in improvingsupport services at the moment, so it is important that they willbe empowered to use available resources and take a centralrole in delivering the Government’s future vision. Failure tobuild on their expertise, experience and community links wouldrepresent a lost opportunity to make change happen.7
2 Overview of the four developmentprojects in the Making ChangeHappen programmeThis chapter sets out the aims of each project, with a briefdescription of the processes where possible. This informationhas been taken mainly from the projects’ proposals, which wereaccepted by the JRF in December 2002 or March 2003. This issupplemented or adapted by details of what actually happened.Two of the projects (ROOOTS and the Tassibee project)provided very rich and varied data, enabling two more detailedcase studies, which can be found later in the report.Helping Each Other, Helping Ourselves, run byTassibee in RotherhamAims To strengthen and develop the capacity of Tassibee to workwith women with long-term mental health problems, usingself-help and empowerment principles. To run two self-help groups along these lines. To reduce the stigma around mental health problemsbetween the women involved in the project, with the longerterm aim of reducing stigmatising attitudes within users ofTassibee generally.8
Overview of the four development projectsBackgroundTassibee started as a prayer group for Pakistani Muslim womenin 1993. It now runs a weekly open luncheon and prayer group,and a range of training, support and social activities to meet theneeds of isolated, variously excluded women, many of whomare first-generation migrants. The ethos of the organisation isgeared towards addressing barriers, building on strengths andenabling change in the lives of the Pakistani Muslim women inRotherham. Process and inclusivity are recognised as keyissues; the process of how the group works together and withexternal organisations is seen as equally important to theoutcome.A need for self-help groups was identified in research (Smith,2001) conducted for the organisation by one of its longstanding allies.ProcessA number of Pakistani Muslim women was trained to developself-help groups, using life-story work as a vehicle forempowerment and change. These women were all known toTassibee already, as volunteers, sessional or outreach workers,and all had direct experience of mental health difficulties.Two self-help groups were then run, one for older women andone for younger mothers. Using a variety of social and leisureactivities alongside life-story work, these groups helpedindividual women to build on their strengths and become moreassertive and confident. Sharing life stories gave the womenopportunities to learn from each other and share copingmechanisms.9
Improving support for black disabled peopleOutcomesWomen who were on the Tassibee project have significantlyimproved self-confidence and are more assertive. More of themnow use public transport and go out alone into Rotherham.Several of the facilitators have gone on to further educationcourses or employment elsewhere. Tassibee has decided tofocus on finding long-term funding for a volunteer supportworker in order to reduce the burden on the co-ordinator andadministrative worker.ROOOTS, run by People in Action in LeedsAims To use direct experience, shared learning and good-practiceexamples to promote positive change in the attitudes of staffworking for local service providers and the culture of otherorganisations (including the Leeds Learning DisabilityPartnership Board). To help direct this change to provide appropriate support forAfrican Caribbean people with learning difficulties.BackgroundPeople in Action has empowered people with learningdifficulties through leisure and social opportunities since 1983.It has a multicultural staff team. People in Action has significantexperience of service user involvement, provision of informationand advice, project management, person-centred planning,leisure and arts opportunities, community networks and10
Overview of the four development projectspartnership working. It has been involved with variousdevelopments since 1991 to improve support to AfricanCaribbean people with learning difficulties. There is a steeringgroup in Chapeltown (an area of Leeds with a large AfricanCaribbean population), which directs the work that People inAction does in this locality. In July 2002, the steering groupdrew a PATH (an inclusive planning tool) to plan how it wouldwork towards its dream over the following year. This PATHincluded the ROOOTS project as part of its target for 2003.ProcessA small-scale audit carried out at the start provided abenchmark for current service provision. This audit alsoidentified organisations that wanted to work with ROOOTS on amore intensive basis.A team of six African Caribbean people with learning difficultieswas appointed. They explored their culture, heritage andpersonal life stories using different arts media with support fromexperienced support workers and a creative arts worker. A‘taster’ day was held for potential participating organisations.They were then offered presentations developed and deliveredby the team, followed by a training day using the PATHplanning tool. Shorter training packages were also available. Allof this work was linked to the PATH drawn up by theChapeltown Steering Group in 2002, updated in 2003 and2004.A participative conference raised the profile of the work locally,as well as developing wider networks and sharing lessonslearned. The conference was chaired and presented by theteam of African Caribbean people with learning difficulties.11
Improving support for black disabled peopleOutcomesSeveral service providers in Leeds who received training fromthe ROOOTS team have developed their practices to take onboard the issues raised. ROOOTS has continued as a trainingprovider and has received some funding to support it tobecome a Social Enterprise.Service Plus, run by ISCOM (InternationalSomali Community Trust), London Borough ofHackneyAims To establish a forum for disabled Somali-speaking peopleliving in the area. To co-ordinate and develop a number of existing services fordisabled Somali-speaking people. To link the beneficiaries of these services into other disabilityand mainstream provision. To help local service planners understand the demography oflocal asylum-seeker and refugee populations, identify theirneeds and inform their services.BackgroundISCOM provides home care services, advocacy, informalcarers’ home sitting, befriending, interpreting and translatingservices for the Somali-speaking population in Hackney. Many12
Overview of the four development projectsof this community are recent arrivals to the UK; many arerefugees from the civil war in the 1990s. The project wasdeveloped from needs expressed by disabled people within theSomali community.This project aimed to bring about change through empoweringservice users of ISCOM to voice their opinions of the services.It provided assistance to carers and helped identify theirsupport needs, as well as offering a forum for the voice ofdisabled people using ISCOM’s services to be heard. It aimedto provide an example for other minority and refugeecommunities on engaging with mainstream services ondisability issues.The project built on services that ISCOM already provided andcentred on a community centre where many people interact ona regular basis.ProcessThe project worker (the first full-time worker to be employed byISCOM ) met with other disability groups, visited each disabledservice user on a regular basis and developed systems forrecording and monitoring their needs. Much of the workconcentrated on individual advocacy, but, through carefulrecord keeping, the project worker was able to bring to forummeetings issues to discuss that were genuine concerns withoutindividuals being identified.The forum proved to be a social event, which centred on food,with the addition of educational speakers and frankdiscussions. Social activities, such as trips out of London, wereorganised to offer to forum members as payment in kind for13
Improving support for black disabled peoplehelping to shape ISCOM’ s services. Towards the end of theproject, a Disability Equality Training Day was held at one of theforum meetings and this proved very popular and useful.OutcomesSeveral individual disabled Somali people had their livessignificantly improved by the project worker acting as anadvocate for them. This has included moving into a moreaccessible flat, getting registered with a GP and claimingbenefits that they are entitled to. ISCOM as an organisation ismuch more aware of the issues involved in disability equalitybecause of the specific training. The work done during theService Plus project to establish recording and monitoringsystems provided ISCOM with the evidence and systems theyneeded to secure funding for two part-time advocacy workers.Waltham Forest Disabled People’s and Carers’Partnership, run by EQUALITIES, LondonBorough of Waltham ForestAims To establish a partnership of black disabled people and theirorganisations in Waltham Forest. To develop the partnership into a vehicle that has a strongcollective voice in the community in order to influence localpolicy development and service provision.14
Overview of the four development projectsBackgroundThe Partnership was identified as a vitally needed resourcewithin the area used to influence service provision and policydevelopment, and give black disabled people a safe space tovoice issues and concerns. The local authority had expressedinterest in such a body, but was unable to finance it because oftheir funding structures.The Partnership aimed to bring together both voluntary groupsand statutory bodies providing services to black disabledpeople and individual people with long-term conditions. Theproject needed to overcome a disillusioned voluntary sectorand overburdened organisations.ProcessThe project started with a survey to determine levels of interestand commitment to the project within the borough. As a result ofthis survey, EQUALITIES decided to involve black carers as wellas disabled people because the carers’ view was that theircultural needs were not being fully met by the local authority. Itbecame obvious that smaller voluntary sector organisationsfound it difficult to send representatives because of a lack ofresources. Those who attended meetings organised byEQUALITIES came on an individual basis in their own time.At this time, the Local Strategic Partnership (LSP) and theCommunity Empowerment Network (CEN) were formed.EQUALITIES’ chief executive (who was working on the JRFfunded project) was chair of the CEN and a representative onthe LSP. EQUALITIES felt that there was considerable potentialto bring about change using these newly created strategicbodies and the structures within them.15
Improving support for black disabled peopleHowever, both these approaches faltered. DespiteEQUALITIES’ representatives actively working on this agenda,they felt that the LSP was ineffectual and unwilling to develop adisabled people’s partnership. EQUALITIES has sincewithdrawn its involvement from both.EQUALITIES was working under difficult circumstances; thelocal authority had been placed under Special Measures (2001/02), which led to significant personnel changes and a chaoticstructure with which to work. EQUALITIES’ workers found itmystifying, saddening and frustrating that it proved so difficult toinfluence these bodies, and to secure a specific space for blackdisabled people and carers on these local strategic bodies.OutcomesEQUALITIES identified key strategic bodies to work with toimprove support for black disabled people and carers. Itlearned that establishing a network of underfunded, disparateblack voluntary sector organisations is not necessarily the mostsuccessful way to change services. National lobbying provedmore productive to increase the voice of black disabled peopleand carers locally.16
3 Emerging lessons from fourgrass-roots projectsThis chapter sets out the main learning points from the fourdevelopment projects (Chapter 2 provides an overview of eachproject). The emerging lessons cover a wide range of topics,from techniques used by the projects to wider issues such aspaying participants and working in more than one language.Some topics are specific to work with black disabled people;others can be applied more generally.Recognising and celebrating multiple identitiesCentral to all projects working to improve support for blackdisabled people is the issue of identity. Often, black disabledpeople slip between support for black people and support fordisabled people. Disability services can be culturallyinappropriate; services for black people can be inaccessible todisabled people.A person’s identity is not something that can be split up intoparts to provide support. One can’t ignore part of one’s identitywhile dealing with another aspect. Martin Banton (2003)summed this up:For me, one of the most powerful statements from thepeople I interviewed when I did the research was froma Black disabled woman: ‘As a Black woman, I can’tsay “Well I’ll deal with my gender today and my racetomorrow”, because I have to deal with it as oneperson, you know, and the same can be said of17
Improving support for black disabled peopledisabled people and lesbians and gays, black disabledpeople, you know whatever combination ofoppression.’(Banton, 2003, p. 3)Several projects found ways to recognise and bring to the foremultiple identities and experiences of ‘double discrimination’ or‘multiple oppression’. The projects used a variety of techniquesto do this.Sharing personal life storiesSharing life stories was important in three of the projects: thoserun by Tassibee, ROOOTS and, to a lesser extent, ISCOM.Black disabled people can be isolated; sharing their life storiesin a safe space can help to overcome this sense of isolation,enabling people to understand that some of the issues are partof wider society, not necessarily directed personally at them.Both ISCOM and Tassibee described a tradition of older peopleexpecting younger people to listen and learn from them; thedevelopment projects helped to break down those barriers andallow people from different generations to learn from each other. Tassibee project: younger women and older womenfound that they were able to learn from each other asthey shared life stories in the training programme at thestart of Helping Each Other, Helping Ourselves. Despitethe age differences, and societal changes in the UK, thewomen’s experiences of leaving rural villages in Pakistanand coming to an urban area in Yorkshire were verysimilar. T
Social Model of Disability to describe a disabled person as someone with impairment, learning difficulty or mental health difficulty who is disabled by barriers in society. 'Black' describes a person from a minority ethnic community or with a minority ethnic racial identity who may experience discrimination based
