short breaks: providing better access and more choice for ... · front cover: image of tree blossom...

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PPP R E S S

��•POLICY

Short breaksProviding better access and more choice for Blackdisabled children and their parents

Ronny Flynn

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Short breaks

First published in Great Britain in May 2002 by

The Policy Press34 Tyndall’s Park RoadBristol BS8 1PYUK

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© The Policy Press and the Joseph Rowntree Foundation 2002

Published for the Joseph Rowntree Foundation by The Policy Press

ISBN 1 86134 428 7

Ronny Flynn is Lecturer in the School of Health and Social Welfare, The Open University.

All rights reserved: no part of this publication may be reproduced, stored in a retrieval system, ortransmitted in any form or by any means, electronic, mechanical, photocopying, recording orotherwise without the prior written permission of the Publishers.

The Joseph Rowntree Foundation has supported this project as part of its programme ofresearch and innovative development projects, which it hopes 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 authors and not necessarily those of the Foundation.

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Front cover: image of tree blossom supplied by DigitalVisionCover design by Qube Design Associates, BristolPrinted in Great Britain by Hobbs the Printers Ltd, Southampton

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ContentsAcknowledgements viExecutive summary vii

1 Setting the context 1Aims and scope of the study 2Legislative and policy context 5

2 What we do and do not know from existing research 9Information: gaps and limitations 9Patterns of use of short break services that emerge from research 11Children with complex medical needs 15What Black disabled children and young people think of short break services 16

3 Barriers to accessing short breaks 17Separation of disability and ethnicity; a lack of service coordination 17Poor leadership, policies, planning, consultation 18Inflexibility of some short break services 19Information about services and perception/understanding of them 19Perceptions about disability 20Lack of an ethnically diverse workforce 20Lack of diversity in short break carers, sitters and other service providers 21Myths about kin and community support 21Inadequate assessment of need and restrictive referral practices 23Appropriateness of services 23

4 What works? 26Acknowledge barriers to access for families 26Plan clearly, prioritise policies and offer management guidance 27Adequately resource short break provision 30Know your locality: use outreach and community development 30Record and monitor ethnicity 31Ensure workforce diversity 32Ask children and young people what they want 33Ask other family members what they want 33Communicate effectively 34Disseminate information 34Stimulate access and demand 35Accept kin as carers 36Ensure diversity of short break carers 36Increase choice and flexibility of services 38Facilitate support groups 39

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Review and evaluate 39Train and develop staff, carers and short break panel members 40Network and share information and practice 40Prioritise culturally competent practice 40

5 Recommendations 42For central government 42For local authorities 43For the providers of short break schemes ��

Gaps in local and national knowledge 44Conclusion 45

Bibliography 46

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“Many Black people do not know about suchservices or do not want social services’involvement. They tend to struggle onand only seek outside help when they

reach breakdown.”(African Caribbean short break carer)

“Parents don’t have close family to help. Theyneed a lot of encouragement to use servicesfor short breaks. I was encouraged by theprevious headteacher of my child’s school.”

(South Asian mother)

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Acknowledgements

Thanks also to everyone who attended the consultation and networking event inSeptember, and gave freely of their time and ideas.

The practice visits had to be organised at short notice, and staff and carers in Bradford,Dudley and Leeds social services, and Barnardo’s projects in London Newham, LondonTower Hamlets and Liverpool, worked with us flexibly and cooperatively.

This review was funded by the Joseph Rowntree Foundation with a grant to the Schoolof Health and Social Welfare at The Open University.

Pratima Patel carried out a literature search in England, Northern Ireland and Wales, andmade contact with a number of relevant organisations. She also carried out the majorityof the practice interviews. Elaine Burrell carried out interviews with parents and shortbreak carers, and one practice interview. Vijay Patel reviewed literature in Scotland andcarried out a separate study with nine children and young people in Scotland. RobHawkins, from Shared Care Network, carried out and analysed the national survey ofselected short break schemes. Thanks to them all for being willing to work to shortdeadlines, and for meeting them.

Thanks as well to Linda Ward, who initiated this work, and to Dorothy Atkinson whoreferred it to me. Emma Stone has been very generous with her time and support. Sheand Bill Bytheway extensively edited my first draft and much improved it.

An Advisory Panel helped with networking and with setting up the work. Members alsoattended the consultation day in London in September 2001 and commented on drafts ofthe report.

Members were:

Nasa BegumTracey BignallMike CorriganRicardo Estee-WaleRob HawkinsChristine LenehanMarion LoweKamila Maqsood

Sue MennearMahera MominBeth TarletonRobina ShahJustin SimonEmma StoneJulie ThompsonLinda Ward

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The term ‘short break’ has been used todescribe a range of services that havedeveloped and changed over time. Theseare referred to variously as ‘respite care’,‘shared care’, ‘family link’, ‘short-termbreak’ and ‘short-term care’. ‘Sittingservices’ and ‘befriending schemes’ aretypes of services that are now included asshort breaks. Prior to 1976, when the firstfamily-based schemes were pioneered inLeeds and Somerset, these services wereusually based in institutions. In contrast,since the 1990s, short breaks have beenprovided mainly through family-basedservices. Family-based short breaksinvolve carers being approved as fostercarers to have a disabled child in theirown home, usually for one weekend amonth. The model has now broadenedconsiderably to include daytime servicesin children’s own homes and other kindsof provision.

This project has a number of aims:

• to review literature on short breaks fordisabled children specifically fromBlack minority ethnic groups;

• to summarise recent and currentdevelopments as outlined in theliterature;

• to identify good and innovativepractices from the literature and infront-line work;

Executive summary

• to clarify and explain strengths andweaknesses in how families gain accessto provision;

• to highlight any differential take-up ofthe various forms of provision;

• to locate gaps in provision andproblems of access to provision;

• to locate existing networks in the field,and recommend ways in whichnetworks can be formed, adapted orstrengthened;

• to recommend research, practiceinitiatives or changes in policy that canimprove access to short breaks.

In order to identify and summarise keyfindings and recommendations for policyand practice, I have reviewed UKliterature going back some 15 years.

In addition, the following fieldwork hasbeen undertaken to supplement theliterature review:

• In Scotland, nine disabled children andyoung people of South Asian1 and

1 In this report, ‘South Asian’ is used to refer topeople whose origins are in India, Pakistan,Bangladesh or Sri Lanka, or any of theaforementioned whose families have lived inAfrican countries for a substantial period oftime.

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Chinese origins were interviewed abouttheir lives and use of services. (Asummary of the report by Vijay Patel isincluded in this publication).

• Two parents and three carers involvedin family-based short break schemes wereinterviewed in London and Nottingham.Two short break carers from Dudleywere also interviewed. Carers andparents were of African-Caribbean andSouth Asian origins.

• A postal survey of 24 family-basedshort break schemes was undertaken togather information on policies andpractices and ‘what works’. Detailswere obtained from 13 such schemes.

From these 13, six schemes were eithervisited by one of the research team, or in-depth telephone interviews were carriedout with project managers.

Policy and practice

There have been changes in the past 20years to the way research, policy andpractice in children’s services considersdisability and ethnicity. The social modelof disability has influenced children’sservices (Marchant, 2001) and thedisability movement has beeninstrumental in the move frominstitutional to community care (Oliver,1996).

It is no longer acceptable for agencies todevelop services without paying attentionto the ethnic composition of thepopulation to be served; or, if particularethnic groups do not use a service, toconclude that “they don’t need it” or that“we’re here – it’s up to them to come andfind us”. There is moreacknowledgement now of howinstitutional racism may have operated tokeep these families out of services, and

that it is the responsibility of serviceproviders to try to be inclusive.

Researchers too are aware that theinclusion of Black families is essential inpolicy and practice-related research, andthat the omission of them from samples isincreasingly an embarrassment. TheEnglish government has introducedcompulsory ethnic monitoring inchildren’s services, and there is anexpectation under the 2000 Race Relations(Amendment) Act that services in all UKcountries will demonstrate how theypromote racial equality. It will no longerbe assumed that they do so.

Disabled children are also becomingmore ‘noticeable by their absence’ andservices are increasingly expected to caterfor disabled children as part of theirprovision to all children. The 2001Special Educational Needs and DisabilityAct, for example, sets an expectation thatchildren and young people with specialeducational needs will be educated inmainstream schools, and that disabledpupils shall not be ‘substantiallydisadvantaged’ in their education.Disability and ethnicity are also beginningto appear together on the same agendas –for example, in English governmentpolicies such as Quality Protects as wellas in research and local statutory andvoluntary sector practice. Policy changesin Scotland are suggested in a number ofcommissioned studies mentioned in VijayPatel’s report, but we were only able tofind evidence of a few initiatives in Walesand Northern Ireland.

What helps access?

Agencies are more likely to be inclusive ifthey acknowledge that their routinepractices may be excluding some families,

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and that they need to identify and targetunder-represented groups. Crucial inpromoting access seem to be:

• knowledge of, and consultation with,the local community;

• effective ethnic record keeping andmonitoring;

• the existence and active use of equalopportunities and anti-racism policies andprocedures;

• clear commitment, leadership andresourcing.

Community relations are also important,as is the appointment of staff from theminority ethnic groups that the servicesare trying to reach. Both are significant inbuilding trust between services andcommunities, and in dispelling mythsabout social work being about stigma,intrusion and the removal of childrenfrom families.

It is also evident that it helps if agenciesprovide clear explanations about thedifferences between services, assessment,need and entitlements. Linked to this isthe ability for services to be culturallycompetent. This includes being alert toracism, and continually reviewing andimproving their practices. Consultationwith minority ethnic groups is crucial.Services should be prepared to seekadvice on need and be finding ways ofmeeting it flexibly – for example, byincreased use of sitting services.Networking with other providers isimportant. In most communities, there isa great deal of expertise.

What are the barriers to access?

Lack of information about the differentservices for families with disabled

Executive summary

children is a recurring theme. Theterminology used just to describe aservice such as short breaks can beconfusing and off-putting to someparents, especially when it also seems tobe frequently changing. Agencies areunlikely to be inclusive if they fail toacknowledge different needs, and insistthat they ‘treat everyone equally’ withoutexamining what this means. Similarly, itis important to recognise and developstrategies for different communities withinthe locality – for example, for differentAfrican or South Asian communities.

Poor communication between serviceproviders and users, leading tomisconceptions about the role of shortbreak services, is common. Someservices were developed with amonocultural user group in mind,resulting in cultural features that makesome parents reluctant to use them.Some services lack the policies,appropriate personnel and leadership toreach out to minority ethnic families.Racism, narrow definitions of whatservices offer and inflexibility about whomight provide them also serve as barriersto take-up.

Recommendations

A detailed list of recommendations forcentral governments, local authorities andproviders of short break schemes, alongwith key gaps in knowledge (local andnational) is provided at the end of thisreport. A Joseph Rowntree Foundation(JRF) Findings summarising the keymessages from this report is availablefrom the JRF and on the JRF website:www.jrf.org.uk.

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The needs of black children weremore likely to remain unmetcompared with white children.This effect was consistent acrossthe whole range of needs coveredby the questionnaire. Similarly,there were higher levels of unmetneed among black parentscompared with white parents. Ofparticular note were unmet needsrelated to information aboutservices. (Beresford, 1995, p 35)

The majority of parents said theyneeded more breaks from caringfor their child but most did not useshort-term care services. Manywere unaware that such servicesmight be available in their areawhile others had chosen not to usesuch provision. (Chamba et al,1999, p 25)

More short-term care and holidayplay schemes should be madeavailable which meet the cultural,linguistic and dietary needs ofparents and children. (Chamba etal, 1999, p 33)

These quotations summarise the issues atthe heart of this review. Is therecontinuing unmet need for short breaksamong Black families? If so, why is this,

Setting the context

and what can assist services in addressingthis unmet need?

The views of Black disabled children (anddisabled children overall) were not wellrepresented in the literature on access toshort breaks by disabled children andtheir families, so the bulk of theinformation is obtained from parents andother carers, and from service providers.The term ‘families’ is often used when itis the child’s parents who are consulted;sisters, brothers, relations and other kinare rarely included. Authors such as JennyMorris and Ruth Marchant have writtenextensively on the need to consult withdisabled children and providedsuggestions for what can work (Morris,1998a, 1999; Marchant and Martyn, 1999;Marchant et al, 1999).

The decision to focus on this aspect ofservices for disabled children and familiesstemmed both from a gathering body ofresearch that has identified low take-up ofshort breaks by minority ethnic families,and from research funded by the JRF,specifically by Bryony Beresford (Expertopinions, 1995) and by Rampaul Chambaand colleagues (On the edge, 1999).Beresford’s research had only includedthe experiences of 94 parents fromminority ethnic groups in a study of 1,142families. The subsequent study by

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Chamba and colleagues sought the viewsof some 600 parents of African Caribbean,Indian, Pakistani and Bangladeshi originswho cared for a ‘severely disabled’ child.It represents the most comprehensivestudy of Black families with a disabledchild to date.

In both studies, a substantial mismatchwas found between parents’ need forshort break services and their actual useof them. Many families who did not usethese services did not know they existed.Other families faced barriers to accessingavailable services such as level ofspeaking and comprehending English,and the appropriateness of the service.Short breaks had consistently beenviewed as positive and desirable byparents, yet take-up was patchy and byno means universal.

The JRF wished to have more detail onthis area of unmet need and so fundedthis review of literature and practice. Inproducing this document I haveconcentrated on minority ethnic groups ofSouth Asian, African and Caribbeanorigins whom I have defined as Black,but I acknowledge that other minorityethnic groups (such as Chinese, Jewish,Irish and Traveller people) face similarsituations over access, and they too areunder-represented in research. Disabledrefugee children also are a neglectedgroup.

By focusing on what needs to be done toensure that Black disabled children andtheir families receive services they areentitled to, it has been necessary to focuson institutional barriers and othernegative aspects. It is not my intention toportray Black families as ‘victims’ but toacknowledge the effects of racism andexclusion on the quality of life for manyfamilies. Members of Black communitiesdo get on with their lives, support each

other and are not always dependent onservices being ‘handed down’ byprofessionals. But with access toappropriate resources and support, theycan do so much more for their childrenand young people.

Aims and scope of the study

This project had a number of aims:

• to review literature on short breaks fordisabled children, specifically fromminority ethnic groups surveyed byChamba and colleagues, whom wedefine as ‘Black’;

• to summarise recent and currentdevelopments as outlined in theliterature;

• to identify good and innovativepractices from the literature and front-line work;

• to clarify strengths and weaknesses inhow families gain access to provision,and reasons for these;

• to highlight any differential take-up ofthe various forms of provision;

• to locate gaps in provision andproblems of access to provision;

• to locate existing networks for servicesto Black families in the field, andrecommend ways in which networkscan be formed, adapted orstrengthened;

• to recommend research, practiceinitiatives or changes in policy that canimprove access to short breaks.

The review covers literature relating toEngland, Wales, Northern Ireland andScotland, though the case examples ofshort break schemes are located inEngland only.

In Northern Ireland, services arebeginning to address minority ethnic

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inclusion but, as yet, disability andethnicity are rarely considered together.However, there are indications that thiscould happen in the near future. Tworeports on minority ethnic needs inNorthern Ireland mention that the needsof children with learning difficulties arejust beginning to be highlighted: theNorthern Ireland Council for EthnicMinorities (NICEM, 1996) notes of theIndian community, “We are beginning tolearn about small groups within ourcommunity such as children with learningdisabilities and the elderly”; and theChinese Welfare Association andBarnardo’s Northern Ireland (1998, p 26)note that one of the most commonproblems from caseloads in the Belfastarea related to child-focused issues andreported by Lay Health Workers waslearning disabilities. In Scotland,interviews were carried out with nineBlack disabled children, focusing onfriendships, pastimes, likes and dislikes,religion, culture and language. Shortbreaks were not specifically featured inScotland as it was felt that comments onaccess to wider services would be moreappropriate for Black families at this pointin time.

In Wales, we were unable to find muchliterature on short breaks for minorityethnic families. A report by Beth Prewetton children’s shared care services onlyhad two Black children recorded out ofthe 540 in the survey (Prewett, 1999b).However, a report by Jaswant Singh forBarnardo’s in Cardiff has raised identicalissues to this review (Singh, 1992). Thereare gaps in information regarding thesituation in Wales that need to be filled.

Language of disability and ethnicity

The language of disability and ethnicityreflects changes in awareness and

inclusion. Terminology in reports istherefore inconsistent and has changedover time. Researchers, funders andservice users have different preferencesand the language of legislation, policyand practice may be different yet again.This report favours the use of termsconsistent with the social model ofdisability, which avoids defining a childby her or his impairment, thereby locating‘the problem’ within the disabled person,but focuses instead on removing disablingbarriers to quality of life erected bysociety’s attitudes to disability (Marchant,2001; Mir et al, 2001).

This report also uses ‘Black’ in a unifyingsense to refer to people of African,Caribbean and South Asian origins, anddistinguishes between different minorityethnic groups where possible. However,‘Black’ and ‘Black minority ethnic’ aresometimes used interchangeably. It isaccepted that White minority ethnicgroups can also experience racism andcultural and religious oppression, but thatracism based on skin colour adds adifferent dimension. However, where wehave information on some groups inrelation to short breaks – for example,Chinese families – who are sometimesincluded in definitions of ‘Black’ andsometimes not, the group has beenincluded.

Short breaks: definitions and debates

Prior to 1976, short break services wereusually referred to as ‘respite care’. Theywere institutionally based and runpredominantly by the health or socialservices. The introduction of family-based short break services in 1976seemed to be welcomed by parents andthis provision grew enormously duringthe 1980s. In the 1990s, short-term careseemed to be taken universally to mean

Setting the context

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family-based services, and it has enjoyedincreased levels of governmentrecognition and support (Prewett, 1999a).

Some family-based services involve thedisabled child being cared for outside thehome – typically the child leaves thehome to stay somewhere overnight(Morris, 1998b). Breaks outside the homecan also involve using leisure facilities ortaking part in a range of social activitieswith other children. Other provisionincludes support in the child’s homewhile family members go out or chooseto spend time in other ways (Stalker, 1991and 1996 describes the development ofshort break services).

There is debate about who short breakservices are really for. There is no doubtof the commitment, skills and enjoymentof short break carers doing the job, andthe positive feelings and experiences ofthe many children who use short breaks(Prewett, 1999a).

However, it has been argued that the term‘short breaks for disabled children’ ismisleading and discriminatory, as itsconcept and origins are parent-centred; aservice requested by parents not children,and offering the adult carers ‘a break’(that is, ‘relief’) from the child. It setsdisabled children apart from their sistersand brothers and friends, who do nothave their time away from their familydescribed as ‘short breaks’; and who,moreover, are not able to go with thedisabled child on these short breaks(Marchant, 2001, p 218). It has also beenargued that a whole ‘short break industry’has developed that creates jobs for localauthority and voluntary agency staff, andpays allowances to non-family membersof a child to care for them, and that thiscan have the effect of undermining thefamily (Cocks, 2000, pp 509-10). Whilethis is clearly not the intention behind

short break schemes and the reason whycarers take on the work, it is importantthat these debates are heard.

If services and society removed disablingbarriers, children could be accommodatedwithout separate services. Also there is astigma attached to these services, as theyare only offered after an externalassessment of family need is carried outrather than being offered as a matter ofright (for an elaboration of these points,see Marchant, 2001, and Morris, 1998b).Sometimes these schemes have been setup without consulting children, youngpeople and their families. Because theyare now part of a system, they can beresistant to change. And families mayhave to fit in with what is offered ratherthan being able to request services thatmeet their needs.

It is only relatively recently that disabledchildren and young people have beenconsulted about the services and supportthey would like, and prepared for theservices they receive. Theyoverwhelmingly want to do the thingsnon-disabled children and young peopledo. They acknowledge the need for themand their parents to have a break fromeach other, and enjoy their time withcarers. They make new friends and takepart in a range of social opportunities.But they generally miss their familieswhen away and do not want to be apartfrom them for too long (the views ofdisabled children and young people aresummarised in JRF, 2001a and theChildren’s Society, 2001).

The study carried out in Scotland withnine children and young peoplehighlighted these and other messages:

• Like all children their age, they want todo things that other children do. Theyare not asking for more, but the same

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access as their peers. Their impairmentprevents some adults fromacknowledging that they have the sameneeds as non-disabled children.

• The education setting was a positiveplace for all the children and thisclearly related to its focus on theirabilities and not the effects of theirimpairments.

• All had friends, but few were able tomaintain contact outside theeducational setting (Patel, 2002).

There is frequent change in themanagement and aims of short breakservices, and tensions inevitably arise inthe attempts to balance the needs of thedifferent parties involved (children,parents, short break carers, project staff,and so on) while keeping the goal ofchild-centred services in sight. But theinclusion of disabled children’s voices andthe voices of other marginalised groupsbrings different kinds of change –centrally to do with the shifting of powerand control to service users. Listening tothese voices and acting on them maymake a real difference to the shape ofservices.

Legislative and policy context

This is a time of much change in publicservices. There are currently manylegislative and policy initiatives withinwhich this review is located. Some of therecommendations in this review arealready being addressed.

Children’s services

In 1998, a report by the Department ofHealth (DoH), England and Wales SocialServices Inspectorate (SSI) and the

Council for Disabled Children (CDC)stated that:

Respite or short-term breaks hasbeen an important component offamily support within all localauthority planning structures andhas been universally regarded byparents as essential. But despitethe positive messages emergingfrom a number of reviews ofrespite care, anomalies andchallenges remain for purchasers,providers and service users.(DoH/SSI/CDC, 1998, p 48)

Other SSI reports have identified gaps inprovision of services for Black families(DoH/SSI, 1994, 2000).

The Quality Protects initiative in Englandspecifies as one of its sub-objectives thatservices should “increase the number ofdisabled children in receipt of familysupport services – including short-termbreaks” (DoH, 2001a).

The English government’s 1998 SixthObjective for Children’s Social Services(DoH, 1998) concerns disabled children,and the Quality Protects programmerequires that local authorities prioritiseshort breaks and “ensure that services areappropriate for ethnic minoritycommunities”. The Third annualoverview report of the Quality Protectsprogramme notes that very few of theManagement Action Plans includedsystematic accounts of how councils weremeeting the special needs of Black andminority ethnic disabled children. Theynoted that overall this was a relativelyunderdeveloped aspect of work (DoH,2001b, p 62). The Quality Protectsprogramme now requires local authoritiesto allocate monies to services for disabledchildren. It also requires them to specifyhow each objective will meet the needs

Setting the context

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of disabled children and their families,and the needs of Black and minorityethnic groups in their area. Objective 6of the Quality Protects Disabled Children’sObjectives and Sub-objectives has beenrevised to specifically include expenditureon short breaks and ensuring services areappropriate for minority ethniccommunities (DoH, 2001c).

In Wales, the Children First ProgrammeGuidance for 2001-02 specifies shortbreaks for inclusion in local authorityrevised Action Plans, albeit with noapparent mention of minority ethnicgroups (National Assembly for Wales,2000).

In December 2001, the Northern IrelandExecutive published its Programme forgovernment. This has gone some waytoward putting ethnicity on the agenda inservices, and the Programme doesacknowledge that “people from ethnicminorities and people with disabilitiesexperience particular difficulties inaccessing some public services” (NorthernIreland Executive, 2001, pp 135-6).NICEM, the voluntary sector, membership-based umbrella organisation, isrepresentative of the Black and minorityethnic sector in Northern Ireland.Following its submission in response tothe draft Programme for government inNovember 2001, some of NICEM’sconcerns (about data collection onethnicity and evidence of racism in publicattitudes) seem to have been addressed.

In Scotland, the 1995 Children (Scotland)Act brought Scotland in line with Englandin relation to the requirement that localauthorities need to pay heed to a child’sracial, linguistic, cultural and religiouspersuasion. It also brought in manyaspects of the United Nations’ Conventionon the Rights of the Child. The researchin Scotland, carried out by Vijay Patel,

reviews service developments regardingethnicity and disability, and notes thatprogress has been relatively slow to datebut that there is optimism for the future.He observes that issues of racism anddiversity have tended to remain invisiblewithin a policy context, and that a majorreview of learning disability, The same asyou (CRU, 2000) by the ScottishExecutive, while providing a number ofgood recommendations, did not touch onthe issues. However, it is hoped that thiswill change in the next few years with theintroduction/implementation of thefollowing:

• 2000 Race Relations Amendment Act,which sets out new requirements forpublic services;

• 2001 Regulation of Care Act, whichintroduces a new commission toinspect social care services inaccordance with an agreed set ofnational care standards;

• Race Equality Action Forum action plansfor the Scottish Executive – a set ofrecommendations to ministers, which setout plans to mainstream race equalitywithin the Scottish Executive andfurther afield (Patel, 2002).

So most of the UK nations are addressingethnicity and disability, though not all arebringing the two together yet, or settingspecific objectives with ring-fencedresources. All have frameworks withinwhich they can locate initiatives.

The Children’s Task Force, which willoversee the development of the NationalService Framework (NSF) for Children inEngland, is committed to inclusion andparticipation. The NSF will explicitlycover disabled children. The relevantsection states:

Taskforce projects should givespecial care to ensure participation

7

is inclusive and reaches childrenand young people from black andethnic minority groups. Careshould also be taken to ensureinclusion of disabled children, andrepresentation in terms of age andgender. The work beingundertaken by the Children’sSociety provides an excellentmodel for other projects startingwork with disabled children.(www.doh.gov.ukchildrenstaskforce/participation.htm)

The Audit Commission is currentlycarrying out a survey of services todisabled children that could providevaluable information about short breaks(Davies, 2001).

At the time of writing, a new consultationstrategy from the Children and YoungPeople’s Unit includes among itsprinciples those of equitable, inclusiveand non-discriminatory services, which allchildren and young people should beable to have access to, and participate in,when they need them. This is a goodbasis on which to argue for short breakprovision.

Thus in 2002 there is quite an impetus forimproving short break provision.

Support for parent/carers of disabledchildren and young people

Both the 2000 Carers and DisabledChildren Act in England and Wales andthe 2001 Health and Social Care Act allowfor direct payments to people withparental responsibility for disabledchildren, and also to disabled youngpeople aged 16 or 17 in their own right.In Scotland, there is equivalent legislationin the form of the 2001 Community Care(Direct Payments) (Scotland) Amendment

Regulations. However, although directpayments may offer more choice andflexibility for parents, it is not yet clearhow they will operate within existingchildren’s services. In addition, relativesare excluded from being paid as ‘carers’under this scheme except in “exceptionalcircumstances”. The legislation alsoprovides for local authority social servicesdepartments to run short break voucherschemes. Voucher schemes are designedto offer flexibility and choice in the wayservices are delivered to persons caredfor, while their usual carer is taking abreak. Guidance for the Carers SpecialGrant, which in Year 2 (2000/01) includedcaring for disabled children and youngpeople, has asked English localauthorities to record any specificdevelopments for carers from minorityethnic backgrounds. In Year 3 (2001/02),agencies are being asked to publicise anydifficulties relating to short breaks.

Learning difficulties

Valuing people (DoH, 2001e), the learningdisability strategy for England, notes thebarriers to participation in society facedby minority ethnic families and how theseare disproportionate in comparison withother sections of the population.Specifically mentioned as areas needingattention are more short breaks and earlydiagnosis of impairment (which is aparticular issue for some South Asiangroups). Ethnicity is not mentioned herein detail and not included specifically inthe objectives and sub-objectives as itnow is in the Quality Protects guidance.The Department of Health commissioneda report by Ghazala Mir and colleagues,which reviews literature on disability andethnicity and has much to say aboutaccess to services and what needs to bedone. It remains to be seen whetherValuing people will be able to prioritise

Setting the context

8

Short breaks

the needs of Black disabled children andyoung people (Ward, 2001).

Anti-discrimination and human rightslegislation

The 1998 Human Rights Act is linked tothe European Convention of HumanRights, to which the UK is a signatory.The United Nations Convention on theRights of the Child is internationallegislation that aims to promote allchildren’s rights and protect children andyoung people. All four UK countries arecovered by this legislation. Services todisabled children from minority ethnicgroups and their families are also coveredby anti-discrimination legislation. All fourUK countries are covered by the 1995Disability Discrimination Act. The 2000Race Relations (Amendment) Act inEngland and Wales, and the same inScotland, will require public services toshow how they promote racial equality –a more active requirement than before.In Northern Ireland, the 1997 RaceRelations (Northern Ireland) Order makesit unlawful to discriminate against anyoneon the grounds of race, colour,nationality, or national or ethnic origin.The international context is therefore onethat is compatible with the work carriedout in this review.

Regarding anti-discrimination, Best valueperformance indicators 2002-2003 hasstrong performance indicators relating toequality that specify racial and disabilityequality. These should greatly assist localservices to work within a framework ofanti-discrimination and inclusion (DTLR,2001).

The Equality Standard for LocalGovernment provides a systematicframework for the mainstreaming ofequalities. It has been developed by the

Commission for Racial Equality, the EqualOpportunities Commission, the DisabilityRights Commission and the EmployersOrganisation for Local Government.Suggested best value performanceindicators for 2002/03 include compliancewith the Equality Standard, the number ofBlack and minority ethnic staff in seniormanagement, and those users/carers insocial services who said that mattersrelating to race, culture or religion werenoted by service providers.

9

2What we do and do not knowfrom existing research

In this section, I review the contributionof research to the development of policyand practice. Research is an integral partof the wider process of improvingservices such as short break schemes andso it is important to recognise that, aswith practice, the strengths andweaknesses of research need to becritically examined. In subsequentchapters, analysis will focus on barriers toaccessing short break services (Chapter 3)and consideration of good practice and‘what works’ (Chapter 4).

Information: gaps and limitations

Information on ethnicity and disability

Information on disabled children, and onchildren from minority ethnic groups, hasnot been routinely collected in the past,neither by local authorities nor byresearchers. Information specifically ondisabled children from minority ethnicgroups is even harder to find. Thoughthere is now more data available, it is stillpatchy and uncoordinated. The wayinformation has been obtained andpresented in the past has varied, and it isnot possible to compare like with like.For example, in England, it is only since2000 that the Department of Health has

expected social services departments toinclude the ethnicity of children in needin their statistical returns. As yet, data onethnicity is not required to be collected inNorthern Ireland, though data on religionis.

Information on ethnicity is notorious forits high non-completion rates, and theserates are not always stated in findings.Studies use different ways of classifyingethnicity, not always separating out thedifferent South Asian groups, or Africanfrom African Caribbean people. It is nowacknowledged that groups united underthe political term ‘Black’ may have verydifferent living circumstances andexperiences of services, and havedifferent life chances and outcomescompared with the majority of Whiteethnic groups (Modood et al, 1997; Erenset al, 1999). In England it will be possibleto analyse the ‘Children in need’ Censusdata in terms of disability and ethnicity,and obtain valuable information.

Statistics and context

Figures from the 1998 England nationalstatistics estimate 7.3% of the combinedadult and child population are fromgroups defined as of African, Caribbean,South Asian, Chinese or ‘mixed’ origins

10

Short breaks

(ONS, 1998). In 2000 the estimated sizeof the minority ethnic population wasfour million, or 7.1% of the totalpopulation. Initial estimates from the2001 Census make this figure 10% (Singh,2001). Between 1992-94 and 1997-99 theminority ethnic population grew by 15%,compared to an increase of 1% in theWhite population. Fifty per cent of thetotal minority ethnic population in 1997-99 were born in the UK; thecorresponding figure for those aged 0-14was 90%. The group with the lowestproportion born in the UK were Chinesepeople at 25% (ONS, 2001). In NorthernIreland the minority ethnic population isestimated as 0.9%, which includesChinese (the largest minority ethnicgroup), Jewish and Traveller people. InWales and in Scotland the minority ethnicpopulations are similar, at approximately1.5% of the total population (ONS, 1998).The Office for National Statistics (ONS)population trends for September 2001show the Black (mixed) population to begrowing at 49% and the Bangladeshipopulation to be growing at 30% (ONS,2001). The Black minority ethnicpopulation is overall a youngerpopulation than the White population,and growing faster, which needs to betaken into account when researching andplanning services.

Black families differ from the majority ofthe White population in the conditions inwhich they live. Poverty, poor housing,unemployment and discriminationdisproportionately affect Black families,with Pakistani, Bangladeshi and AfricanCaribbean families being the mostdisadvantaged (Modood et al, 1997; JRF,1999b). There is also evidence that theseadverse social and environmentalconditions, plus issues concerned withaccess to services, are linked to the higherincidence of some impairments in someminority ethnic groups (Mir et al, 2001).

So Black families with disabled childrenmay be further disadvantaged.

Sample sizes, data collection andcomparisons

Research has often been carried out withsmall samples of minority ethnic families,making generalisation and replicationdifficult. Researchers sometimes comparetheir findings with national statistics onminority ethnic groups when localcomparisons would be more useful, sincein some local authorities Black people area majority of the population. Also, aninaccurate picture is produced whenseveral schemes are aggregated. One, forexample, may have a high number ofBlack users.

Some studies compare their findings withstatistics on the combined adult and childminority ethnic population in the localarea. Often it would be more useful tomake comparisons with the overallchildren and young people populationonly, since it is often these age groupsthat have the largest proportion fromminority ethnic groups (ONS, 2001).

Lack of information on some Blackgroups and in some geographical areas

There is little detailed information onmany aspects of Black and minorityethnic children and families and their useof short breaks. For example:

• How are they used by specific groupssuch as Bangladeshi or AfricanCaribbean families?

• How do children and young peopledescribe their experience of suchbreaks, and what changes would theylike to see?

11

• How is the use of short breaksinfluenced by gender, or age orimpairment?

• What are the specific needs of refugeeand asylum-seeking children andyoung people, another diverse minoritygroup that is only beginning to beresearched?

• How do the needs of Black familieswith disabled children vary betweendifferent localities and different parts ofthe UK?

The re-analysis of the Office ofPopulation Censuses and SurveysDisability Survey data sheds some light onthe under-representation of African andAfrican Caribbean children in short-termcare, though the data for this wascollected in the 1980s. The survey foundthat children from these ethnic groupswere more likely to be cared for awayfrom home in long-term residential care(Gordon et al, 2000).

Changes in short break services

Reflecting changes over time in shortbreak practice, research studies havelooked at different aspects of what wereonce routinely called ‘respite care’services. Early studies includedresidential institutional provision providedby health as well as social services, whilelater studies focused more on family-based short break provision, provided bysocial services and voluntary agencies.More recently, home-based services suchas sitting and befriending have becomepopular, and this is backed up byevidence from the survey of practicecarried out for this review, where theywere valued in particular by South Asianfamilies. Information on provisionappears patchy and uncoordinated.Shared Care Network, the nationalumbrella organisation representing short

break schemes, and the Norah FryResearch Centre, University of Bristol,have up-to-date information on family-based short break provision, but thecurrent extent of non-family-basedprovision appears unknown. The latestsurvey by Shared Care Network notes thatless than 5% of schemes said theyprovided long-term care, although this isnot the focus for Shared Care Network’smembers (Prewett, 1999a). Anecdotalevidence from the Council for DisabledChildren in London shows regionalvariations in bed-based provision – forexample, 85% in Northern Irelandcompared with 30% in London – sogeneralisations may not be possible.

Patterns of use of short breakservices that emerge fromresearch

Black families with disabled children

More is known about services Blackfamilies do not use than the ones they do.Evidence points to low take-up of familysupport services by South Asiancommunities with non-disabled children(Qureshi et al, 2000). A study of Blackfamilies’ use of family centres found thatmost centres were not accessible fordisabled users and that because theadministration of services for disabledchildren was separate from those for non-disabled children, the inclusion ofdisabled children did not seem to beroutine. This was identified as an area ofconcern (Butt and Box, 1998). Africanand African Caribbean children andyoung people may be more likely to liveaway from their families in residentialcare. Other studies support the findingthat disabled children in general are morelikely to live away from home as looked-after children, or be in residential

What we do and do not know from existing research

12

Short breaks

educational provision, than non-disabledchildren (Morris, 1995, 1998b; Gordon etal, 2000; DoH, 20002; Abbott et al, 2001a,2001b; DTLR, 2001.

In relation to short break services, theseservices have been available for morethan 25 years in one form or another, butresearch studies are still finding low take-up from Black families, particularly fromBangladeshi, African and Caribbeancommunities. Evidence from literature offamilies ‘choosing’ not to use services washard to qualify. It was sometimes clearthat the reasons for not using a serviceoffered were because it was disliked bythe child, or perceived as culturallyinappropriate (Hatton et al, 2001). Somefamilies associated social services andsocial work with removal of theirchildren, or accepting ‘charity’, or asevidence that they could not cope (Shah,1992; Singh, 1992). One recent studyfound reasonable awareness amonghealth, social services and education staffof unequal access to services by minorityethnic families and how processes theyuse might be biased and excluding ofthem (Steele and Sergison, 2001).

More Black families use institutionalresidential provision

Black families (in particular those fromSouth Asian groups) seem more likely touse residential provision for theirchildren, both from health and socialservices, and less likely to use family-based short break care. This finding wasfirst reported by Carol Robinson andKirsten Stalker in 1989, with more than

60% of Black families using residentialinstitutions. Ten years later it was still thecase, when just over half of the Blackfamilies in Chamba’s national surveyreported using a short-term care ‘centre’,a greater proportion than found inBeresford’s survey of predominantlyWhite families (Robinson and Stalker,1989; Beresford, 1995; Chamba et al,1999).

It is not clear from these studies whetherthis difference is because parents are notoffered alternatives to residential care, orif family-based services are not seen asdesirable by Black parents. Robinson andStalker offer a number of possibleexplanations. One is the requirement forfamilies to negotiate directly with thefamily link carers. Another is theshortage of Black carers and Black linkworkers. There is then the possibility ofparental anxieties about their child stayingwith families who may not meet culturaland religious needs – in their study, therewas evidence that family link carers werepredominantly White and middle class.There is also the likelihood that in 1989parents lacked information on family-based provision as, at that time, it wasrelatively new (Robinson and Stalker,1989).

Parents in Robina Shah’s study, and alsoin Hatton et al’s and Chamba et al’sstudies, expressed anxieties about thecultural appropriateness of the services,which may explain their reluctance totake them up, regardless of their need.However, short break services arechanging rapidly so this informationneeds to be updated. Also we did notspecifically ask for information onresidential care establishments.

2 Note that, in this study, 36% of disabledlooked-after children were in residential carecompared with 13% of all looked-afterchildren.

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Unmet need: waiting lists, non-users andinsufficient services

There is over-representation of Blackfamilies on the waiting lists for family-based care, and as non-users of all shortbreak services (Stalker and Robinson,1991a, 1991b; Prewett, 1999a).

The overall message of recent research isthat there may now be more Blackfamilies using short break services than inthe past, but there is still unmet need.

It might be assumed that Black familiesare not using family-based servicesbecause they are using residentialprovision (as previously discussed).However, Black families have also beendisproportionately represented on shortbreak waiting lists, and as non-users ofshort break services (not only family-based ones). Beth Prewett’s recentsurvey of family-based short breakschemes noted that half as many childrenwere on waiting lists as were receivingservices, and that nearly 90% of schemeshad waiting lists. The reason given for2% of children on the waiting list wasthere being a shortage of support carersfrom particular ethnic groups (Prewett,1999a). This may be an underestimate iflack of appropriate carers preventreferrals in the first place (Stalker andRobinson, 1991a, 1991b). Families oftenhave to be referred to a scheme byprofessionals before they can go on awaiting list, and there is evidence thatsome do not even get that far.

In Chamba et al’s study, no more thanone in four parents was using any kind ofshort-term care. Less than one in fiveBangladeshi families said they used ashort-term care service. Only 10% ofHatton’s sample of 136 parents reportedreceiving ‘respite care’, and this was

mostly in specialist centres managed bysocial services.

In the survey of short break schemescarried out for this project by Shared CareNetwork, nine of the 13 schemesprovided information on the ethniccomposition of their waiting lists. Thoughsome of the total numbers were small,five schemes reported that more than 40%of families on their waiting lists were ofminority ethnic origin, and in one schemethis was nine out of the 11 families on thelist. These were schemes that were awareof their responsibilities to Black familiesand were actively providing a service forthem, but demand was outstrippingsupply.

Rosemary Tozer undertook a study of 24families with more than one disabledchild. Through a voluntary agency and aconsultant, she recruited and interviewedparents in six Pakistani families. Thoughmatched by the extent of their need withthe White families, none were receivingassistance from social services, and nonewere receiving any kind of short breaks.This was not true of the White families inher study (Tozer, 1999). BryonyBeresford also identified higher levels ofunmet need in Black families, comparedwith White families. In her study of morethan 1,100 parents, 94 (8%) of whomwere from minority ethnic groups, morethan two in three of the minority ethnicfamilies said they did not have a breakfrom looking after their child as often asthey needed. Yet, as in Chamba et al’sstudy, three quarters of the parents didnot use short-term care. A third of thenon-users did not know the serviceexisted and the others had ‘chosen’ not touse it. There were no details on thereasons for ‘non-using’. However, ofthose who did use short breaks, two-thirds felt they needed more. Althoughdata from the minority ethnic families was


14

Short breaks

not analysed in detail, or by specificethnic group, there were clearly barriersto access for all families. These need tobe researched in more detail (Beresford,1995; Chamba et al, 1999).

A study published in 1990 found thatLeeds social services’ family placementscheme catered for 168 children, plus 90children receiving short-term care in tworesidential homes. But, despite the ethnicmake-up of the local population, only 10children from Black and minority ethniccommunities were being supported(Baxter et al, 1990). The Leeds familyplacement scheme was one of theprojects visited as part of this review, andthe short break scheme made changes tothe service in 1996 that were movingtoward an increased uptake by Blackfamilies.

A study by Jaswant Singh, carried out inCardiff around the same time, describesthe process used by one Barnardo’s shortbreak project that had only one Blackservice user and wanted to increaseaccess to others – of whom there were atleast 22 children and young peopleeligible. It is a good example ofproactive work aimed at identifying andalleviating unmet need (Singh, 1992).

The Office for Population Censuses andSurveys study found under-representationof disabled children from minority ethnicgroups as users of ‘respite’ care. Thissurvey noted that no child from an Asianfamily had received a short break in theprevious year, and that only 18% of Asianparents had heard of ‘respite’ care(Gordon et al, 2000). Barriers to accesswill be discussed in detail in the nextchapter.

Although most parents who used a shortbreak service were satisfied with it, twoout of five in Chamba et al’s large survey

were dissatisfied with the amount of carethat was available. In Hatton’s study,parents who used short breaks also feltthat the amount they received was notsufficient, much as they valued the service(Hatton et al, 2001). This is unsurprising,given that short breaks are clearly astrained service faced with much unmetneed.

Overnight stays versus home-basedfamily link services

Evidence from the survey carried out byShared Care Network for this projectshowed a marked preference for home-based and sitting services rather thanovernight stays. This was explicitlymentioned by a number of schemes.

Two recent studies found low take-up ofovernight short breaks by South Asianchildren and young people, one byPakistani young people in general (Rabieeet al, 2001) and the other particularly byIndian and Pakistani girls (Steele andSergison, 2001). In contrast, these youngpeople were making good use of after-school daytime services and home caresupport. It is not clear whether, in thepast, overnight or institutional provisionwas the only type of short break on offerto parents who may have lacked theinformation needed to request alternativeservices. We also do not haveinformation on how the local employmentsituation, housing need or density of thepopulation might affect the ability ofschemes to provide different types ofshort break care. However, if in someareas of the UK parents and youngpeople now have more information andchoice, they may prefer to use dayservices. (It is worth noting that the studyby Rabiee et al (2001) interviewed theyoung people, not their parents, unlikevirtually all other studies.)

15

Evidence from two short break projectsvisited as part of this research confirmedthe popularity of sitting and other daytimeservices with Black families (see Chapter4 on increasing choice and flexibility ofservices).

Those ‘in the know’ are more likely to getservices

Some studies point to services beingdisproportionately used by families withhigher incomes, and by those who havethe resources to put pressure on serviceproviders. This is likely to put some Blackfamilies at a disadvantage, as they aremore likely than White families to be on alow income (Mir et al, 2001). Blackfamilies are also less likely to have‘culturally collective power’; that is, Whitefamilies are more likely to know how tonegotiate and engage with the systemssurrounding public services or knowsomeone who can offer a ‘way in’ tothem. South Asian parents have beenfound to be disadvantaged in this way.Almost half of the South Asian parents ina study by Hatton and colleagues did notknow about ‘respite care’:

These carers [here: parents] werefound to have a reduced possibilityof ‘chance encounters’ withprofessionals and other carers,which for White carers had beenthe first step in getting help fromstatutory and voluntary agencies.(Hatton et al, 1998, quoted in Miret al, 2001, p 39)

When looking at patterns of use, then, itis necessary to examine separately eachkind of short break service and thelocality and population, as well asexamining use by each minority ethnicgroup.

Children with complex medicalneeds

Short breaks have traditionally catered fordisabled children and young people withlearning difficulties rather than those withother impairments. A survey from theNorah Fry Research Centre found thatalthough this was still the case in 1999,schemes are becoming more inclusive ofall disabled children, including those withcomplex healthcare needs (Prewett,1999a). Most local studies do not analysedata by ethnicity, type of service andimpairment, possibly because numbersare often small.

Noyes’ study of a group of 18 youngpeople who used assisted ventilationincluded young people who came fromsix different ethnic/cultural backgrounds,including three young people for whomEnglish was not their first language(Noyes, 1999, p 12). These young peopleand their parents said that, even thoughtaking a break was very important forthem, frequently ‘respite care’ had notbeen considered or the provision wastotally inadequate. For the parents, thelack of this service was a source ofsignificant stress. The young people saidthey did not want to go to hospital orhospices when their parents had a break,as they did not consider themselves ill.

A current study by the Norah FryResearch Centre is looking at theexperiences of using services of a diversegroup of children and young people withcomplex health needs, including thosefrom Black families. Figures fromBradford social services indicated that in1996, 37% of children on their databasefor complex health and serious illnesswere of Asian origin, which meant theywere over-represented (Green, 2001).More analysis of this kind of data that


16

Short breaks

exists in NHS and social services statisticsis necessary to help with understandingrelationships between impairment, illnessand ethnicity.

What Black disabled children andyoung people think of shortbreak services

A recent review of literature, undertakenby Ali and colleagues, noted that “thevoices of Black and Asian children indisability research have been almostsilent” (Ali et al, 2001, p 949). Althoughsome of the studies had included minorityethnic children and young people, theircontributions have not been referred tospecifically, so remain invisible.

Three studies are exceptions to this. Oneis Noyes’ (1999) study of children andyoung people using assisted ventilation.The second looks at young people andindependent living (Bignall and Butt,2000), and the third at young peopleleaving care (Rabiee et al, 2001). It issignificant that two of these studies werecarried out by Black researchers. Butthere are changes in hand. Recently, anumber of initiatives have put disabledchildren and young people’s views centrestage, though the focus is general, or onaccess to leisure, or inclusion in schools.These include Black disabled childrenand young people, though there are stillvirtually no studies that have focusedspecifically on their views about services(JRF Findings 2001a, 2001b; Murray, 2002:forthcoming).

There is evidence that local authoritypractice in consulting in general is at anearly stage, so Black children and youngpeople are even less likely to have beenconsulted without specific effort (DoH,2001b, p 61). Steele and Sergison’s study

in Huddersfield interviewed 18 childrenand young people from minority ethnicgroups who had learning difficulties,though not specifically about shortbreaks. They noted that ethnicity andreligion were more important to thesechildren than to White children, andstressed that this should be taken intoaccount in services.

As part of this JRF project, interviewswere carried out in Scotland with nineBlack disabled children and young peopleaged between six and 25 years. Therewere six males and three females, sevenof whom were defined by their parents asPakistani and two as Chinese. Threewere using short break services, two witha family and one in a residential unit.The young people commented on howdifficult it was to maintain contact withfriends outside school times. Theywanted to have access to theopportunities their non-disabled peershad, and knew that there were barriers tothis. Culture and faith were important tothem, but these aspects did not seem tobe supported in their schools. Moreoverthey were also denied, to some extent,within their children’s own communities.

There is evidence of change, however.Two projects currently in progress at theNorah Fry Research Centre in Bristol haveincluded interviews with Black disabledyoung people (Heslop, work in progress),and the Audit Commission study is alsocurrently seeking their views (Davies,2001).

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3Barriers to accessingshort breaks

If Black families with disabled childrenare not using services, it is no longeracceptable to see it as their responsibility:it is not down to them to find out what isavailable and to make their ownarrangements to use services. It is nowrecognised that institutional barriers exist,and that racism as a barrier runs throughall services unless clear steps are taken toarrest it. The main barriers aresummarised below.

Separation of disability andethnicity; a lack of servicecoordination

One of the young men interviewed in theScottish study (Patel, 2002) commentedthat “Disability organisations do notunderstand issues of culture and religionwhilst ethnic minority organisations donot understand issues of disability”. Thishas been a central theme in regard tomultiple oppressions. It reflects who hasinstitutional power, and who may bethreatening it (Vernon, 1996; Diniz, 1999;Banton and Hirsch, 2000). The creationby those who have power of services thatsuit themselves has a long history, andthe reluctance to address diversity inservices at the outset has resulted inservices such as ‘family placement’,

‘family support’ and ‘disabled children’sservices’ running on parallel tracks. Astudy of family centre use by Blackfamilies noted the administrativeseparation of family support and servicesfor disabled children (Butt and Box,1998). Ethnicity in services has frequentlynot featured at all, or has suffered fromthe separation described earlier. Inaddition, services may not work togethereffectively. For example, poverty affectsfamilies with disabled children more thanthose with non-disabled children, but ismore likely to affect Black families. Bothgroups also have greater housing needs.The Chamba et al (1999) survey foundthat six out of 10 families reported theirhome to be unsuitable for the care oftheir child. Pakistani and Bangladeshifamilies reported the most housingproblems. Poor housing raises the levelof stress in a family and affects the qualityof life and care for children in manyways. A recent report on the involvementof Black disabled adults in Warwickshiredetails the effects of this exclusion andthe separation of disability and ethnicitywithin voluntary and statutoryorganisations (Banton and Hirsch, 2000).

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Short breaks

Poor leadership, policies,planning, consultation

Though there were few studies in theshort break literature that focusedspecifically on the management ofculturally competent and ethnicallyinclusive services, it was possible toextract aspects of service developmentand delivery that could act as barriers toaccess.

It was common for work with minorityethnic groups to be seen in the literatureand in practice as an ‘add-on’ rather thanas an integral part of mainstream serviceplanning and provision. Integratedservices were likely to be better resourcedand given higher priority than separateservices and, ideally, they should be ableto meet all users’ needs. However, asthey did not, specialist services werenecessary as well, but these weregenerally under-resourced and insecure(Ahmad et al, 1998; Mir et al, 2001).

Funding placed many constraintson services in both statutory andvoluntary sectors. Few initiativeshad mainstream budgets; mostwere supported through short-termfunding. Initiatives therefore haduncertain futures. Initiatives in thevoluntary sector were especiallyvulnerable to funding crises. Tightremits often hampered flexibilityand thus the ability to respond touser wishes. (Mir et al, 2001)

An insecure service is less likely to givepositive messages to service users. LoneBlack workers on short-term contracts canshoulder a disproportionate share of theresponsibility for making servicesinclusive. Many central governmentinitiatives such as Quality Protects andHealth Action Zones are short term, and

services are dependent on them forresources needed to encompass diversityin services. This situation is likely tocontinue unless active policy decisionsare made to bring such marginal andshort-term initiatives into the mainstream.

Lack of specific racial and disabilityequality policies and procedures forplanning and service delivery, lack ofleadership and management responsibilityfor carrying them out, and lack ofmonitoring, can all be barriers. Servicesthat do not know the ethnic make-up oftheir local population, and do not includethem in their consultation process, willnot gain the confidence of groups that arealready marginalised. If there is anunwillingness to engage with how racismoperates in services, and to debate thisopenly and challenge deep-rootedassumptions about Black families, servicescannot move forward.

The role of training is important here.Beth Prewett’s study identifies a need fortraining in equalities and anti-oppressivepractice for short break panel members.Some years before that, other researchersfrom the Norah Fry Centre, having foundevidence of a lack of awareness, werealso recommending staff training incultural sensitivity (Robinson et al, 1993;Prewett, 1999a). Such training still doesnot appear to be routine, however. Arecent report on minority ethnic childrenand young people with learningdifficulties in the Huddersfield areaincluded interviews with 49 health,education and social services staff. Ahigh proportion had no training incultural competence, and the majority feltthey would like to have more (Steele andSergison, 2001).

Jenny Morris, in her study of theimplementation of the 1989 Children Actas it related to disabled children in three

19

local authorities, found a lack of socialwork support for families who used‘respite care’ and who should be coveredunder the children’s legislation (Morris,1998b, p 69). This is likely to be moreprominent for Black families who under-use services, leading to an even greaterlevel of unmet need.

Inflexibility of some short breakservices

Some studies have found short breakprovision to be insufficiently flexible forsome Black parents. There are exampleswhere the definition of ‘respite care’ didnot include breaks while parents visitedtheir country of origin to attend a funeral,religious or cultural events (Baxter et al,1990, p 40).

Another study found that because of theinflexibility of services, only a third ofSouth Asian families with a child withlearning difficulties used short breaks.For example, they were only available inblocks of one or two weeks, which ruledout visits abroad, and did not allow for‘occasional’ nights – to attend weddingsor other family events, for example(Hatton et al, 1997, cited in Mir et al,2001, p 34).

The six South Asian families interviewedas part of Rosemary Tozer’s study feltthat: “the provision on offer was culturallyinappropriate, that the language andcustoms of the children would not beunderstood. Parents would havepreferred day care and support at homefrom someone who could play with thechildren for a few hours, rather thanovernight respite” (Tozer, 1999, p 41).

While short break provision has definitelybecome more flexible and includes home-

based services, provision of the full rangeof services is not universal, and whatparents are offered can depend on wherethey live (Prewett, 1999a).

Information about services andperception/understanding ofthem

A consistent theme across all the literatureand maintained over time is that Blackfamilies, and in particular those for whomEnglish is not their first language, do notknow about services and entitlements(Chamba et al, 1999; Hatton et al, 2001).They also may have low expectations ofaccess to services and reservations aboutusing them, even when offered, althoughin Hatton et al’s study, once parents hadbeen told about short breaks, almost halfof them wanted to use the service.

An institutionally racist approach toservice delivery would locate theresponsibility for finding out about andaccessing services with familiesthemselves, arguing that the service isavailable to all, regardless of ethnicity,language and religion. An inclusiveservice that understands how institutionalracism works to keep families out ofservices would see their role in aproactive way and would work to dispelmyths, find out what the barriers to accessare, and remove them. There areexamples of South Asian mothersbelieving that their disabled child wouldbe removed from the family permanentlyif they agreed to receive help from socialservices (Poonia and Ward, 1990; Shah,1992) and of parental concerns aboutpotential child abuse (Hatton et al, 2001).Studies show a reluctance to ask for helpdue to the stigma associated with ‘charity’in accepting welfare, and withacknowledging their child as disabled

Barriers to accessing short breaks

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Short breaks

(Singh, 1992; Butt et al, 2000; Jones et al,2002).

The language and terminology of shortbreak care needs to be examined asparents may not understand the terms ormay misinterpret them. This messageapplies equally to the language used todescribe other forms of provision such as‘direct payments’ to which parent/carersof disabled children may be entitled (Buttet al, 2000).

There are overlaps here with processesthat exclude families, both Black andWhite, who live in poverty. The effects ofdisadvantage, a lack of information anddifficulties with communication can lowerexpectations of support from statutoryservices. This may explain the under-representation of Bangladeshi families inservices. Chamba et al’s (1999) survey ofsome 600 families found that fewer thanhalf the Bangladeshi parents could speakEnglish, and that this was consistent withtheir greater need for an interpreter whentalking to professionals. More than athird of parents felt they had less than afull understanding of spoken English,with only 25% of Bangladeshi parentssaying they understood spoken Englishcompletely (see also Chamba and Ahmad,2000).

Chamba et al found that, although theprovision of interpreters was onlyreported by six out of 10 families thatneeded them, the majority of Bangladeshifamilies (who expressed the most needfor this service) were usually providedwith one. Across all ethnic groups,parents were least at ease with writingEnglish compared with speaking orreading it.

One of the parents interviewed for thisreport echoed many of the views in theliterature about parents’ awareness and

perceptions of services: fear that thechild’s religious and cultural needs wouldnot be met, not knowing about theservice, seeing accepting the service ascharity when they had nothing to giveback, and feeling that asking for help wassomehow shirking responsibility. Therewas also shame at being thought not tobe coping.

Perceptions about disability

In a study carried out in Wales, JaswantSingh (1992) interviewed all knownparents of a child or young person withlearning difficulties in one particularlocality. He found that parents did notknow how to ask for help, that some sawtheir child in a stigmatising way andtherefore did not want to draw attentionto themselves, and they equated askingfor help with accepting ‘charity’, whichwas perceived negatively. Singhrecommended that family-link schemesshould take time and effort to breakdown these barriers to access, dispel themyths, and engage parents in support fortheir children and themselves. Althoughdiscriminatory attitudes toward disabilityare widespread across all ethnic groups,racism can mean that workers colludewith Black families’ attitudes, explainingthis as ‘being in their culture’ instead ofchallenging them.

Lack of an ethnically diverseworkforce

Every study looking at access to servicesby Black and minority ethnic familiesmentions the importance of providershaving a workforce that reflects thecommunities they are trying to serve.This applies to social and health workers

21

as well as to short break carers. Many ofthose interviewed in studies where thiswas not the case, were aware of thebarrier this created but had not alwaysfound ways of changing the status quo.Parents drew attention to this fact whendiscussing take-up of services. WhereEnglish was not the first language of hard-to-reach communities, monolingualworkers could not do their job properly.Communities lacked role models todemonstrate that the services would caterfor them. Parents worried that their childwould not have her or his cultural needsmet by someone from another ethnicgroup. This last finding was consistentacross the many studies referenced.

‘Ethnically diverse’ does not mean aservice having a single Black worker whothen takes all the responsibility for workwith Black and minority ethniccommunities. This can lead to burn-out,alienation and marginalisation.

Lack of diversity in short breakcarers, sitters and other serviceproviders

Several studies pointed to a severeshortage of short break carers for disabledchildren and their families from minorityethnic groups. The shortage of Blackshort break carers and sitters wasfrequently raised by providers as a reasonfor low take-up of services. Others hadnoted no mention of minority ethniccarers; for example, in local authoritiesvisited by the Social Services Inspectoratein England and Wales (DHSS/SSI, 1987).

Beth Prewett’s national survey found thatthere were less short break carers fromminority ethnic groups than children andyoung people who needed them, and thatthis need had not been reducing. She

found that 25% of children’s schemesidentified a need to recruit short breakcarers from South Asian communities, and10% needed more carers of Africanorigins. Schemes felt that lack of staff andresources prevented them from giving thisenough priority (Prewett, 1999a).

In the field of children’s social services,there is now more emphasis placed onkeeping children linked to their kin andcommunities and, for looked-afterchildren, the recruitment and support ofkin as foster carers (DoH, 1991, 2001c). Itis surprising then, that Prewett’s studyfound that only 3.5% of children’s supportcarers were relations. She also foundsome schemes who said they were ‘notallowed’ to use relatives. However, onestudy notes delay in linking children thatwas attributed to a shortage of Asiancarers, but gives an example of closerelatives willing to be carers but theagency refusing to approve them, as itwas not their policy (Stalker andRobinson, 1991b). The authors note that,in contrast, the recruitment of kin ascarers had met with success in otherplaces – for example, in Bradford.

Myths about kin and communitysupport

The following messages may seem tocontradict those in the previous section.If kin support can be a myth, how canrecruiting kin as carers be possible? Butthe two can coexist. It is important hereto acknowledge differences betweenethnic groups, geographical location ofcommunities and patterns of employment,for example. Each local area will havedifferent potential for kin relationships.

The belief is commonly expressed byservice providers that Black families (in


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Short breaks

particular, those from South Asiancommunities) are under-represented inservices because they ‘look after theirown’ and get support from the extendedfamily. This has been continuallychallenged by research evidence. Singh(1992) describes this as a myth, andsuggests that it is the characteristics of theservices, not the families, that areresponsible for low take-up. Beresfordfound that Black parents weresignificantly less likely to be receivingsupport from extended family membersthan White parents. She argues that this“contradicts the belief that minority ethnicfamilies tend to be well supported bytheir extended family” (1995, p 22).Black parents were also less likely thanWhite parents to belong to a supportgroup, and a third of parents from theseminority ethnic groups did not knowwhat a support group was. This is notsurprising if support groups havepredominantly White members, and ifBlack families do not find themwelcoming places.

Chamba et al’s (1999) survey of some 600Black families also found parentsreceiving less emotional and practicalsupport from their partners/spouses thanthe mainly White parents in Beresford’sstudy. Black African Caribbean andIndian groups received less support fromthe extended family than other groups.The main reason is that family memberslived too far away. Parents, particularlyPakistani parents, were less likely tobelong to, or know about, support groupsthan parents in Beresford’s survey.

Over two thirds of the 136 South Asianparents in the study by Hatton andcolleagues reported no help fromextended family networks – a greaterproportion than in Chamba et al’s study.However, higher levels of support fromwithin the immediate family compared to

Chamba et al’s findings were reported(Hatton et al, 2001).

The six Pakistani families interviewed byRobina Shah in Tozer’s study (Tozer,1999) also reported less support from thewider family than White families, and alack of contact with other parents ofdisabled children in that they were “leastlikely to be in touch with other parentsexcept within the family” (Tozer, 1999, p24).

In Shah’s (1992) study, low take-up ofshort breaks was often interpreted byproviders as the service not being neededrather than a lack of understanding orknowledge of it (1992, p 48).

In a study focusing on minority ethnicchildren with learning disabilities, carriedout for Huddersfield NHS Trust some 10years later, Steele and Sergison (2001)interviewed 38 parents/carers and 22children, as well as a large number ofstaff. They still found a generalperception among staff that South Asianshad extended family support,commenting, “Whether this is true ingeneral of ‘Asian populations’ it is nottrue of the families involved in our study.Carers and children had little suchsupport and lacked confidence withexternal agencies”(p 8).

Lack of support in South Asian families,and the research evidence for this issummarised in the publication by Mir andcolleagues, Learning difficulties andethnicity (2001), emphasising thatassumptions about families having kinand community support should not begiven as a reason for low take-up of shortbreaks.

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Inadequate assessment of needand restrictive referral practices

Mir and colleagues (2001) suggest that thecircumstances of carers (taken here tomean parents) are not adequatelyinvestigated in the assessment of need.Interpretations of what people are saying,and a tendency for White workers to takeinformation at ‘face value’, can compoundtheir disadvantage.

The ability of short break servicepersonnel to assess need effectivelydepends on a number of factors. Thecriteria used need to be free of culturalbias, and those undertaking assessmentsneed to be aware of how the assessmentprocess can unintentionally as well asintentionally discriminate against Blackfamilies. Those carrying out assessmentshave to be sure they are asking the rightquestions, that the answers are beinginterpreted correctly within the realms ofsomeone’s experience, and that the familyis in a position to make an informeddecision about what is available for them.

The majority of short break projectscontacted, and those described in theliterature, did not accept direct referralsfrom families and communities. Evenvoluntary organisations felt they were tiedto accepting referrals from social servicespersonnel through service-levelagreements. Yet the stigma attached toasking for social services help can be abarrier. In addition, if projects and socialworkers are not linked into minorityethnic communities or if they feeluncomfortable in their presence, they areunlikely to engage with families longenough to make a referral. South Asianparents’ lack of access to referral systemsis also likely to be linked to the ability ofservice personnel to assess themappropriately.


Appropriateness of services

Racism

As early as 1990, the study by Baxter andcolleagues identified the concerns ofparents about the appropriateness ofplacements. Religion, language, racismand culture were all found to besignificant barriers that needed to beaddressed (Baxter et al, 1990). Parentshave also reported experiencing racismdirectly in services and in everyday life.In Rosemary Tozer’s (1999) study ofparents with more than one disabledchild, all families reported hostilitytowards them, but the Pakistani familiesspecifically reported experiences ofracism. Atkin and Ahmad (2000), in theirwork on parents’ views of service supportfor sickle-cell or thalassaemia, noted thatracism was reported by a number ofparents, particularly those of AfricanCaribbean origin. Parents felt that sickle-cell disease was seen as a ‘Black problem’and therefore it received little attention.

Ethnic matching

With studies showing an under-representation of Black short break carers,there is less likelihood of ethnic matching– that is, the provision of ‘same race’placements. Beckford and Robinson in1993 found 267 children (46% of Blackchildren) to be in trans-racial placements,and the proportion of Black carers hasnot risen significantly since then.Prewett’s study shows a high percentageof schemes reporting ‘same race’placements, which she explains as Blackcarers frequently being linked with morethan one disabled child (Prewett, 1999a).This has implications for the support andworkload of Black carers.

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Short breaks

Choice for children and families isimportant here. Schemes should betrying to recruit a wide range of carers,sitters, and so on, so they can match byethnicity, language and religion wherepossible. However, children and youngpeople are living with their families whocan also provide for their identity needs.So in discussion it may sometimes bepossible for parents to accept Whitecarers if they can make an informedchoice. A mother in Vijay Patel’s (2002)Scottish study had got to know a Whitecarer who had been a sitter for herchildren. This carer was trusted,respected the family’s religious andcultural beliefs and the children weretherefore able to stay overnight with her.Similarly, Black families may have Whiteneighbours or kin who know the childrenwell and would be suitable as carers.While the possibility of non-ethnicallymatched placements exists, it should notbe used by services as a reason for notdiversifying the pool of carers.

Culture

A number of studies draw attention to thereluctance of families to take up serviceson offer due to their anxieties that, indoing so, the child would experience aloss of culture or religion. Both a studyof Asian families with preschool deafchildren, and another of deafness andethnicity, mentioned parents’ anxietiesabout the appropriateness of services(Ahmad et al, 1998; Chamba et al, 1998).This was also a reason given by 59% ofHatton’s South Asian parents (Hatton etal, 2001).

In Double discrimination Baxter andcolleagues (1990) reported that: “Manyfamilies would prefer to see their relativesplaced in situations where their individualcultural, religious and physical needs will

be met and where their differing needsare not seen as a problem” (p 40).

Robina Shah’s (1992) interview study of35 Asian families found a lack ofreassurance that families would be able tohave carers who shared the language,religion and culture of their child,although they overwhelmingly desiredthis. Shah also found services unable toguarantee other needs – for example, thatonly women would carry out personalcare for girls. She also noted difficultiesin the provision of appropriate food, andrespect for other religious and culturalneeds.

Steele and Sergison’s (2001) research inHuddersfield noted that social services’support with ‘residential breaks forchildren’ seemed to have been designedwith the White majority in mind. Thesurvey suggested that this did not alwaysfit with some minority ethnic cultures andthat services should reconsider how tomeet minority groups’ needs (p 43).

The Pakistani families in RosemaryTozer’s (1999) study also felt that theprovision on offer was culturallyinappropriate, that the language andcustoms of the children would not beunderstood, and that day care andsupport at home from someone whocould play with the children for a fewhours, were preferred, rather thanovernight ‘respite’.

It is not clear from the research whetherthese were the experiences of the Blackyoung people as well as their parents, butas an example of a different type ofcultural inappropriateness, some youngpeople using assisted ventilation in onestudy had inappropriate short breakexperiences (Noyes, 1999). They did notwant to go to hospital or hospices whentheir parents had a break, as they did not

25

consider themselves ill, but this is all thatthey had been offered. Jenny Morris’sstudy of three local authorities also foundhospices being used as a ‘respite’ facilityfor disabled children who were notterminally ill, and who may not havebeen ill at all. Very young children werestaying in this provision. This was notnecessarily good practice (Morris, 1999).

A recent study of four children’s hospicesfound that three were not addressingissues of culture or ‘race’, and were likelyto be off-putting to non-Christians; forexample, by having crucifixes on thewalls and being located in monasterygrounds (Robinson and Jackson, 2000,and personal communication with CarolRobinson, 2001).

The report of the Social ServicesInspectorate on services to minorityethnic children and families mentionedthe importance of cultural identity,parents’ fear of ‘losing’ a child toresidential care, and the different culturalenvironments they would experience ineducation and training settings (DoH/SSI,2000).

Another issue that is mentioned inresearch literature is that of definitions of‘independence’ for young people. Onestudy found that independence in aWestern model was associated withindividuality and living separately fromfamily and other kin. This was not sharedby some of the Black young disabledpeople (Bignall and Butt, 2000). Othersalso note that people with learningdifficulties from South Asian and AfricanCaribbean communities felt thatindependence could be achieved within afamily setting, which favoured collectivityrather than individuality. This couldaccount for some families’ reluctance touse short break services where children

have to stay away overnight (Mir et al,2001).

In drawing conclusions from thisevidence, it is important not to fix onnarrow definitions of what ‘culture’ is, asit varies from family to family and overtime. The overarching message is thatpeople should be asked what they wantand what kind of support they wouldconsider appropriate.


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Short breaks

4What works?

An important objective in this study is tofind out what works: to identify themessages coming from successfulschemes and good practice.

The evidence for this section comes froma number of sources. Thirteen family-based short break schemes replied to aquestionnaire sent out via Shared CareNetwork, the national coordinatingorganisation for short break care. Thequestionnaire asked for examples of goodpractice, and what was working for themin relation to Black and minority ethnicfamilies and short break carers. The 13schemes included some with quite smallBlack populations. However, theseschemes provided few ideas on whatworks, unlike those with larger Blackpopulations. Six of these schemes werethen visited, in order to collect moredetailed information. Three wereBarnardo’s schemes and three were runby local authorities. The majority hadbeen established for more than 10 years.The six schemes were in Bradford,Dudley, Leeds, London Newham, LondonTower Hamlets and Liverpool. Interviewswere carried out in Nottingham andLondon with three Black short breakcarers and two Black parents, and twoBlack short break carers in Dudley werealso interviewed.

Although ‘size’ of Black populations neednot be the reason for good practice (orlack of it) as Richards and Ince found(2000), there is a need to collect anddisseminate good practice from areas withsmall Black populations. Some schemesmay be undervaluing what they aredoing.

Practice and research literature also offersa number of messages and thesereferences are highlighted in bold in theBibliography.

Messages are summarised as follows.

Acknowledge barriers to accessfor families

One of the first stages in the process ofsolving problems is acknowledging thatthey exist. Some short break schemeshad been operating in areas with highminority ethnic populations for a numberof years before they had identified andtackled under-representation. For them,an initial review of how the scheme wasoperating was necessary to identify wherethe service needed to improve. The nextstep was often to employ a Blackdevelopment worker, who would providea ‘way in’ to local communities. From

27

this, other initiatives would follow – forexample, improving communication,providing information or undertakingmore appropriate assessments.

“After three years it was clear thatthe scheme was not beingsufficiently used by the AsianCommunity … we decided our firstpriority … would be to see if thestructure and presentation of thescheme could be made moreappropriate…. We first looked atthe Asian families we had on thescheme already. It appeared thatthe families were difficult to matchwith our current ‘carer families’ forthree main reasons – language,transport and lack of phones.These factors were present withwhite families of course, butseemed magnified with the Asianfamilies. The answer to languagewas obviously to recruit moreAsian families as carers, and theanswer to the second was to findfamilies in the locality of thoseneeding the service. These initialthoughts led us to the morefundamental problem of our ownlanguage and knowledge base. Ifwe were to recruit people ashelpers in on the schemes and ifwe wanted to understand whatAsian families might want from arespite care scheme we needed toknow how to communicate, whereto communicate and with whom tocommunicate. Our next stepswere therefore to talk to Asianpeople, both parents andprofessionals, about the schemeand to try and find funds for anAsian social worker. The latterpoint was the catalyst to our laterimprovement.” (Bradford)

Plan clearly, prioritise policies andoffer management guidance

Building in diversity from the outset canavoid provision for Black families being‘added on’ as an afterthought. This canensure that the services reflect theirneeds. Policies and procedures areneeded to affirm an organisation’scommitment to diversity and access, andstrong leadership helps with managementand implementation.

The opportunity to set up a new scheme,or to rework and expand an existing one,means that planning for diversity can bebuilt in from the beginning.

The success of enabling Black andminority ethnic families access isthat this was thought of at theoutset and not as an add-on. Theproject leader knew that theservice had to be representative atthe outset of meeting diversecommunity needs, resulting in lessstrenuous work later on.(Newham)

Barnardo’s Families TogetherProject in Tower Hamlets was setup in 1987 as a pilot scheme. Thestaffing at the time was a projectleader, an administrator and a part-time Bangladeshi man. It wasrecognised by the staff thatBangladeshi carers and familiesneed to be approached throughthe men, hence the Bengali-speaking male worker. (TowerHamlets)

The schemes that seem to have theclearest practices in relation to access byBlack families also have specific policystatements about service provision thatinclude clear statements about non-

What works?

28

Short breaks

discrimination, inclusion and access. Allschemes that replied to the questionnairewere able to refer to the corporate equalopportunities policies of their parentorganisation or social servicesdepartment. However, not all couldproduce these, or actively link them tothe service they provided. Children andfamily services do not always have theirown policy, let alone one on racialequality in services. One scheme workercommented: “It has taken a while toassemble the info and docs or find outthey don’t exist … it’s been an interestingexercise”.

These are examples of the kind ofmessages that Barnardo’s Hamara,Spectrum and Family Link projects havein their policies:

The Project will endeavour to linkchildren and young people withcarers/sitters/volunteers from theirown racial, linguistic, religious andcultural group as we believe that achild’s inheritance is an essentialpart of their identity – an importantpart of what makes them the waythey are, and one of the strengthswhich will help them grow upconfidently. If this is not possible,the child will only be placedwithin a family that has a clearunderstanding of the issues of raceand culture. Should this happen,the Project will continue to searchfor a carer reflecting the child’sbackground. (Hamara)

The Project actively works toincrease accessibility andappropriateness of service forpotential and current black serviceusers. This will be achieved by:

• Staff ensuring that all serviceusers’ cultural background is

clearly recorded on all Projectdocuments.

• Staff to give consideration toservice users’ language needsand to discuss with Projectmanagers about use ofinterpreters and translation.

• Staff to make themselves familiarwith the complaints proceduresand the languages this isavailable in.

• When vacancies occur,consideration will be given tofilling this vacancy with amember of staff from a specificcultural background of currentand potential service users.

• The Project in its entirety (décor,publicity, food, and so on) willstrive to represent the culturalbackground of current andpotential service users.(Spectrum)

Spectrum has a set of Race EqualityStandards that, for each standard, outlineshow it will be achieved. The exampleabove is from Standard 1.

Within Family Link we take ourEqual Opportunities Policy andBasis and Values statement veryseriously. This means that ourstaff, carers, sitters and volunteerswill always reflect the racial,cultural and religious diversity ofNewham and will be welcomedand respected for the skills andcommitment they bring to theproject, regardless of theirdisability, gender, sexuality, maritalstatus and class. In the same way,we are committed to equality ofaccess to our service for the

29

children, young people andfamilies who are referred.… Staff,carers, sitters and volunteers willtherefore work in partnership withthe children, young people andtheir families who receive ourservices to achieve this aim.(Family Link)

Sense, the national voluntary organisationfor deafblind people, though not a shortbreak scheme as such, runs residentialholiday provision. Its representativesreplied to the questionnaire and theorganisation’s policy states:

… We recognise that membershipof the race and culture into whicha person was born is their right,regardless of disability. Senseclients from minority communitieswill, therefore, have particularneeds in the areas of race andculture which we must seek tomeet. (Equal access and equalopportunities in Sense: A statementof intent)

Other schemes have yet to reach Blackfamilies with their service. The ShortBreak Care scheme run by NorthTyneside Children’s Services, for example,serves a population with a percentagefrom minority ethnic groups of 1.1%.However, its service handbook has anequal opportunities and anti-discrimination statement, and it also statesthat:

A child’s religious backgroundmust be considered. Theinformation will be recorded andthey will be given the opportunityto attend religious services whererequested. Children/young peoplewill attend services of a differentfaith where permission from childand parent has been sought. The

religious denomination of a child’sfamily will be taken into accountwherever possible when matchinga child/family to a carer.

This kind of statement is a start towardinclusion.

In Liverpool, a Black DevelopmentWorking Group has been set up and hasplanned a series of meetings withcommunity groups in the area. Thesemeetings have confirmed that there is alack of knowledge about the work ofBarnardo’s as an organisation and alsoabout what fostering (where the shortbreak scheme is located) involves.Having now made a number of importantcommunity links, the project is now ableto work to rectify this.

In Leeds, since 1996, the family placementteam of the social services department asa whole (covering services to disabledchildren and adults) has been working toan action plan for minority ethnicdevelopment work. The children’s sittingand short break services are componentsof these. In addition, Leeds has recruiteda working group to advise and assist,drawing on the skills of Black staff inother parts of the City Council. Thisgroup is still in operation and sets yearlytargets for the service.

In Bolton and Tameside, multidisciplinaryworkshops were held to look at issues ofaccess to services by Black families (whowere generically defined as carers).Though not specifically about children’sservices, all the recommendations andpoints in the two summary reports arerelevant and echo findings from this study(Hepworth, 2000a, 2000b).

What works?

30

Short breaks

Adequately resource short breakprovision

Messages from the literature emphasisethe short-term nature of funding for‘minority ethnic’ type initiatives. We didnot ask about the resourcing of schemesin the survey, but a number of them arefunded as an integral part of serviceprovision – including minority ethnicworkers – and so have some security andstability. Schemes in Bradford, Leeds andmany of the Barnardo’s projects, are notone-offs but have long-termorganisational commitment. Although thiskind of service can never have enoughfunds, the Barnardo’s schemes seemparticularly well resourced. But this isdue to fundraising efforts. Family Link inNewham has benefited from being one ofthe year 2000 appeal charities of the LordMayor of London, enabling it to move toa new building in 2001. Different aspectsof project work draw on funds fromdifferent sources – for example, from theCarers Special Grant, Children’s Promiseand the Children’s Fund. So funding isnever assumed and is always beingsought.

Organisations with limited funds may betempted to look for low-cost forms ofprovision. They may decide to expandtheir sitting services, for example. If so,they may find that this is not a cheaperoption as sitters can be paid more perhour than approved carers. Nevertheless,such costs can be balanced against theattraction of providing a service that isvalued by neglected groups and therebymeeting the needs of more families fromminority ethnic groups.

Know your locality: use outreachand community development

The barriers to accessing servicesmentioned in Chapter 3 can have theeffect of rendering minority ethnicfamilies invisible to the majority whoprovide the services. Even White workerswho live locally may not know where to‘find’ African Caribbean and South Asianfamilies. In these situations, communitywork skills have been found to be useful.Places of worship, community projects,cinemas showing Asian films, and othercultural and social events, are usefulstarting points.

“She [the Asian social worker] wasable to use her contacts in thecommunity to help give thescheme respectability. She wasable to suggest new avenues topresent publicity, ie corner shops,particular clinics used by Asians.”(Bradford)

“Word of mouth has beensuccessful as has been the raisingof the scheme’s and Barnardo’sprofile within the community bythe Black development worker.”(Liverpool)

“Tapping into existing groups andnetworks such as women’slanguage classes has been quiteuseful.” (Bradford)

“There was a lengthy consultationperiod where a number of peoplewere approached. The male headsof households [sic] of familiesknown to have disabled childrenwere approached. The workerswent to visit families, healthcentres, schools, GPs andcommunity groups. A parent carer

31

was involved in this process toencourage parents to comeforward and use the service.”(Tower Hamlets)

One of the carers interviewed directly forthis study affirmed the importance ofoutreach, and even of social workersgoing from door to door, informingpeople about the service. She felt a socialworker from the same ethnic groupwould be better able to encouragepotential users.

Outreach, of course, is a continuousprocess. Needs and communities change,and a competent service will always belooking to match its services to localneed. In particular, when working withmarginalised and excluded groups,outreach is essential. Schemes that buildthis into their normal running costs andprocedures are more likely to succeed. InLeeds, the Asian development workerregularly visits nurseries and schools,community centres, neighbourhoodprojects and local groups. Having a stallat the Mela (festival) in Roundhay Park,for example, was described as “a veryenjoyable, fun day”.

“[We] need to do ground workbefore targeting [recruitment ofcarers]. Helping people to have anunderstanding by speaking aboutthe services to groups, communityauthorities etc before targeting.”(Newham)

“A proactive communitydevelopment approach [forrecruiting carers] had been fairlysuccessfully tried out by SharingCare [the short break scheme inDudley]. This was very staffintensive and a major problem wasthe team’s ability to continue thislevel of involvement.” (Dudley)

Record and monitor ethnicity

The importance of accurate recordkeeping on ethnicity is stressed in theliterature, and also by schemes aiming forgood practice. It is only by regularlycollecting the statistics, and then usingthem to implement and change services,that progress on inclusion can be made.Schemes that analyse their information onfamilies by ethnicity are much clearerabout the need to develop services. Aspopulations change, services need tochange to suit. Even where schemes aresuccessfully including families fromdiverse communities, they still need torecognise and investigate the possibilitythat there are others not being reached.Barnardo’s Family Link project inNewham is finding increasing needamong different African communities,including refugees and asylum seekers.As ‘African’ covers such a diverse groupof people, the project is having to thinkand work strategically. This involvesnetworking, outreach, and support withlanguage skills, to identify barriers toaccess, and then changing practices toaccommodate accordingly.

The examples below show attempts by anumber of schemes to address unmetneed:

“We need to recruit [carers] fromSomali and Turkish communities.”(Hamara)

“There are a few African childrenbut we have not really got shortbreak carers for them, and AfricanCaribbean carers are also sought.”(Newham)

“A male worker has attracted malesitters, and we now have eight, allfrom Black and minority ethnic

What works?

32

Short breaks

groups. The male sitters seem toprefer to talk to a male worker(they are working with maleteenagers)….” (Newham)

“The majority of the [minorityethnic] users and carers arePakistani Muslim with not manyfrom Bangladeshi and AfricanCaribbean communities. EasternEuropean communities are notthought to be reached.”(Bradford)

“There is a need for more carersfrom the Sikh community. Therehas not been a representativeresponse from the Bangladeshicommunity.” (Leeds)

The Leeds project also provided a copy ofa Race Equality Impact Assessment reportthat they developed in December 2001.In this, it has set targets for improving itsethnic monitoring – for example, byspecifying each of the different ethnic andnationality groups covered under thecategory ‘Asian’.

Barnardo’s Families Together scheme inTower Hamlets is aware that it is still notreaching all the communities the serviceneeds to reflect, but it is committed totrying:

“There is a significant Chinesecommunity but no Chinese usersof the Project’s services. TheProject staff have tried toencourage Chinese families to usethe services but without success …likewise they have not been ableto recruit carers from the Chinesecommunity…. They have used theradio and worked with a Turkishcommunity centre in a nearbyborough but have had nosuccess…. This is largely due to

the stigma – some families feelthey cannot use outside services.The Project has not given up andis still looking at trying to find theright way to get other ethnicgroups to use the service ... theyhave gone into other boroughs tofind carers from the Turkishcommunity. They have spoken toparents at schools in an effort torecruit minority ethnic carers.”

Ensure workforce diversity

All studies and all projects included in thisreview are in agreement that having Blackstaff makes a difference to the perceptionand uptake of the service among Blackgroups. Barnardo’s North West schemerecruited a Black development workertwo years ago, an active member of theAfrican Caribbean community. Thisworker has built links between thecommunity and the scheme. The projectleader wrote: “In the mid-1990s werecognised we were an all-white staffgroup. Barnardo’s had little serviceprovision within the black and ethniccommunities in Liverpool”.

Both the Bradford and Leeds schemeshave also changed the nature of theirservices by the recruitment of just oneBlack worker. The Bradford scheme nowhas one more. In Tower Hamlets, theproject specifically recruited an AfricanCaribbean social worker “… to enableBlack carers [of African origins] to comeforward. This clearly bears out researchfindings that projects need Black staff torecruit and support Black carers andfamilies”.

Schemes in Liverpool and Leeds hadtackled the implications of employing a

33

lone Black worker as a training issue forthem. In Liverpool, the scheme hadnetworked with others in a similarposition. Barnardo’s scheme workershave access to a regional Black Workers’Forum for support. Other positivestrategies were an explicit commitment tojoint responsibility for ‘minority ethnic’issues, long-term security of employmentfor such workers, and clear peer andmanagement support.

Gender diversity is also important.Barnardo’s Family Link in Newham hasrecently recruited a White male deputyproject leader. This seems to haveenabled the recruitment of male sitters,particularly from Black groups.

Ask children and young peoplewhat they want

There is quite a gap in practice in respectto asking children and young peoplewhat they want. Reviews werementioned as providing a chance forchildren and young people to beconsulted. Even schemes that docommunicate regularly with children andyoung people, and observe their well-being, feel more could be done to involvethem in shaping services. Family Link inNewham does work proactively withsome children to match needs andservices: “Generally with the Asiancommunities networking seemed to besuccessful; ie asking the children on thewaiting list if they would like someonethat they know of to offer care such as acousin and/or an existing carer”.

Disabled children in Newham Borough asa whole have been part of a significantconsultation exercise coordinated byJenny Morris. Local project workers(including Family Link staff) received

training in communication skills so theycan interview disabled children andyoung people, many of whom are fromBlack groups.

In Tower Hamlets, most of the staff havecommunication skills, such as in the useof Makaton, and ensure that children andyoung people are included. More needsto be done in this area, but there are anumber of national initiatives andavailable resources that demonstrate thatpolicy and practice is changing (Ward,1998; JRF, 2001a, 2001b; Triangle, 2001).Vijay Patel’s (2002) work for this project isagain relevant here. The nine childrenand young people he interviewed wereinterested in making and maintainingfriendships, having assistance so theycould play outside and go where otherchildren go rather than using short breakservices as such. Thus access to leisurefacilities and personal assistance seemscrucial.

Ask other family members whatthey want

Only three of the 13 schemes in thesurvey specifically said they assess whatfamilies require of the service, but theseschemes had noted that parents wantflexible and culturally appropriate servicesand “an extension of services to includeclubs, and so on”. There is a consensusthat parents want more sitting and home-based services. This links with thebroadening concept of short breaks notedin Chapter 1.

Barnardo’s Family Link in Newham tookthe opportunity to consult with familiesbefore moving into its new purpose-builtpremises in 2001. The project staff hadregular consultation meetings and sent aquestionnaire, receiving a response from

What works?

34

Short breaks

over a third of the families. They nowhold consultation meetings four times ayear and draw on parent involvement intheir annual reviews, recognising that thisis a way of getting feedback for serviceplanning. In Leeds, the short breakscheme sent a questionnaire to all parentsusing the service in April 2000-01 and justover 40% replied. Although the replieswere not analysed by ethnicity (whichwould have been extremely helpful),parents were overwhelmingly positiveabout the service.

Communicate effectively

Once families have referred themselves toa scheme or to social services as a resultof effective outreach work, are they ableto find someone sympathetic and able tocommunicate with them? For someunder-represented groups, ananswerphone message in their firstlanguage, or being able to speak withsomeone in their first language, can makea service seem really welcoming.Schemes in Leeds and Spectrum inHanworth, London, have answerphonemessages, and in London someone willcall back and speak in a caller’s firstlanguage. Barnet also has different-language telephone numbers on leaflets.“We have three Asian social workers whobetween them speak Urdu, Punjabi,Hindi, Gujarati and Somali” (Barnardo’sHamara Project, Walthamstow, London).

Similarly service users of Sense canrequest information in differentlanguages, or can use an interpreter bytelephone via a language line.

Barnado’s Families Together project inTower Hamlets has a bilingual secretary/receptionist who is the first point ofreference for most users. The scheme

also employs interpreters and translatorsas well as having bilingual social workers.

In Bradford, the interpreting unit canengage an interpreter through a three-waytelephone link, if staff who speak therelevant language are not available.

Disseminate information

Lack of available information isrecognised as a key explanation of whyservices are not taken up by those inneed, and why it is difficult to recruitshort break carers from under-representedgroups. Many schemes feel they alreadyprovide enough information, but oftenthis is not wholly appropriate oraccessible or properly targeted. Theinformation produced needs to be in avariety of media – such as video,audiotapes, posters and leaflets – as wellas spread by word of mouth. It needs tobe inclusive of the families that schemesare trying to reach. This means payingattention to images, photos and pictures,and making sure that the text or othermessages contain positive and welcomingmessages, “putting things like ‘allcommunities are welcome’ oninformation” (Newham).

This attention to diversity is desirable not‘just’ because there may be Black familiesneeding the service locally, but alsobecause reflecting diversity is an essentialpart of good practice. Translating leafletsinto languages used in the localcommunity and having answerphonemessages and audiotapes for loan indifferent languages were all mentioned.Getting the local press interested infeaturing short break care, and using thepublicity mechanisms of community,religious and other groups have alsoworked well.

35

The Asian development worker in Leedshas regular slots on Radio Ramadan,where she promotes the short break (andother) services. Leeds also has leaflets indifferent community languages. Bradfordhas tried a number of strategies, includinga range of leaflets in different languages,radio slots and video:

“We made a video using Asianfamilies with an Urdu commentary,which could be lent to eitherpotential carers or users for thewhole family to view.”

“Our initial meetings for potentialcarers were offered in a choice ofEnglish, Punjabi or Bengali.Transport was offered to thepeople attending the meetings.”(Bradford)

Translations have not always workedwell, though. In Barnet, the schemeworker commented: “Earlier distributionand mailing of other language leaflets wasnot at all successful. Translating theleaflet did not necessarily translate theconcepts. A different approach needs tobe thought through”.

It is important to have members of thesame language group involved in thetranslation and proofing – and, better still,in writing appropriate text drawing oncommonly shared cultural concepts.

In Dudley, the questionnaire for familieswith a disabled child is available on thecouncil website, so parents can completeit there and be included on the register.The question asks them to state theirethnicity (in an open box with nocategories suggested) and also to state thefirst language of all those they list on theform.

Stimulate access and demand

Several themes emerge here. One isaccepting referrals directly from parentsor other members of the community.Another is making links with localminority ethnic groups and involvingthem in the dissemination of information,identification of need and the planning ofthe service. Third, a diversity of shortbreak carers and also project staff can beobtained by actively networking withlocal people.

One parent interviewed for this studyintended to apply to her local scheme tobe a carer as she wanted to “givesomething back”. She felt it importantthat children from minority ethnic groupshad carers they could relate to. Thisparent said that every day sherecommended the short break service toother Black parents.

It has to be acknowledged that there israrely going to be enough provision tomeet all needs. However, various aspectsof the referral process have clearly actedas a barrier for minority ethnic families.Family Link in Newham encouragesword-of-mouth information so thatfamilies can refer themselves to socialservices, though not directly to the projectitself. If social services are working withschemes in this way to include rather thanexclude families, this can result inincreased access as personal contactbrings with it reassurance that the familywill be treated fairly.

In Barnardo’s Hamara project inWalthamstow, 30% of referrals were fromparents in 2000-01. In Liverpool, “Word ofmouth has been successful, as has beenthe raising of the scheme’s and Barnardo’sprofile within the community by theBlack development worker. The aim of

What works?

36

Short breaks

the scheme is to place Black children inculturally appropriate care, whichincludes disability” (Telephoneconversation with Barnardo’s Liverpoolproject leader).

Accept kin as carers

From the questionnaire responses, itseems that schemes that are thinkingabout inclusion do accept kin as carers,sitters and befrienders. Project workers inNewham, for example, asked children ontheir waiting lists to recommend someonewho could be approached. Neverthelessthere are reservations. Bradford hasmade extensive use of kin in the past, buthas reviewed its practices of using kinsuch as grandparents, sisters and brothers.Friends and neighbours are routinelywelcomed as potential carers, butmembers of the household or immediaterelations are not. In Leeds, too, closerelatives were in the past approved asfoster carers, but not if they weremembers of the same household. Currentpractice is to provide paid support forrelatives offering short breaks underSection 17 of the 1989 Children Act.

The reasons for this need to be exploredfurther. It may be necessary to keep anopen mind about what may be in the bestinterests of the child, and to obtain theviews of children about who theyconsider might be most suitable as carers.It will be worth monitoring policychanges such as those associated withDirect Payments to see if this allowsfamily members or wider kin to beemployed as personal assistants (who arepaid to provide support asked for by adisabled person).

Ensure diversity of short breakcarers

Parents mostly want carers who reflecttheir children’s and their own ethnicgroup. Children need familiarity and rolemodels. National and local policiessupport ethnic matching, but this will nothappen unless actively promoted.Minority ethnic groups need to feelwelcomed and to also see others likethemselves involved in management,support and making policy. In this way,they feel represented at all levels.Schemes have realised this and many areworking hard to develop or maintaindiversity. The carers and parentsinterviewed for this study are keen tohave Black staff assessing and supportingcarers. Parents reported feeling morecomfortable with someone from theirown ethnic group, and they said theywould bypass other workers to contacttheir preferred worker if necessary.

“We targeted national minorityethnic papers, eg The Voice. Wealso established a diversity forumto advise us.” (Sense)

“We have reviewed our processes,providing follow-up home visitsfollowing initial enquiries, to sharedetails of our work. Panel is nowrepresentative of local black andethnic communities.” (Barnardo’sNorth West, Liverpool)

Barnardo’s North West also has a specificleaflet on fostering in Black and minorityethnic communities, aimed at recruiting adiversity of carers.

In London Pimlico, the overnight shortbreak scheme of Westminster socialservices advertised nationally in The Voice

37

newspaper, as well as in the local paper.Word of mouth has also been successful.

The Asian carer who was interviewed inDudley felt that a face-to-face directapproach to potential carers could workwell, and that someone doing this whospoke the language and understood thefamilies’ culture would be welcome. Sheadvocated a higher public profile of thescheme at Asian community events andoffered to assist.

Jewish communities in Barnet are thelargest minority ethnic group at 16%,followed by Indian people at 7%. In 2000and 2001, the short break scheme carriedout recruitment campaigns to increase thenumber of Black and minority ethniccarers. This involved illustrated adverts,posters and leaflets in communitylanguages. An advertisement in the localfree newspaper generated as many as 150enquiries. The scheme now feels it needsa more diverse staff group to follow thisinitiative up effectively, offering trainingin a range of languages, and providingethnically matched and culturallycomfortable support.

In order to recruit a wide group of carers,scheme workers in Bradford encouragedexisting carers to “bring a friend along” toevents. They provided stalls and displaysin suitable places, carried out personalvisits to homes, as well as visitingwomen’s groups. In Newham, there havebeen targeted campaigns:

“… a campaign three years ago toAfrican Caribbean communities;potential carers who might haveappropriate accommodation (formobility needs) and sometimescouples – not necessarily partnersor husband and wife teams, buttwo people who would like to

What works?

work together to offer care i.e. anaunt and niece.” (Newham)

Tower Hamlets’ Families Together schemestaff very much value word of mouth as away of recruiting more carers. They haveheld the equivalent of a Tupperwareparty, where one carer agrees to host anevent and gets all the costs covered. As aresult, friends and relations have a socialevent as well as hearing about shortbreaks and becoming carers.

“In the Bangladeshi community themain form of recruitment is ‘wordof mouth’. The project has neverhad problems recruitingBangladeshi carers.” (TowerHamlets)

This is helped greatly by having staff whoare comfortable in diverse social settings,and who can interpret the responsibilitiesof the job in a flexible way. Also they arestill reaping benefits from an earlierrecruitment campaign, demonstrating thatconcentrated investment can have long-term payoffs:

“A most successful piece of workfor the Project was theirrecruitment campaign/drive sevenyears ago. They are still gettingenquiries from posters put up allaround the community: GPsurgeries, libraries, schools,community centres, etc. It was atargeted recruitment, whichhighlighted the ethnic backgroundof children on the waiting list.”(Tower Hamlets)

With regard to actually appointing peopleas short break carers, Bradford has foundAsian families uncomfortable with givingnames and addresses of referees. Thescheme has adopted the practice of takingverbal information from referees, as there

38

Short breaks

is a mistrust of official paperwork andform filling that is not necessarily to dowith literacy but with intrusion.

Increase choice and flexibility ofservices

The concept of short breaks hasbroadened out considerably since thetime when schemes offered just overnightstays with a short break carer. This isvery welcome, since evidence fromexisting research as well as several of theshort break schemes that took part in thisstudy points to the popularity of sittingservices and other day services with Blackfamilies.

In Tower Hamlets, the original Barnardo’sFamilies Together project has now beendivided into two separate projects.Families Together deals with home-basedand overnight stays carried out by shortbreak carers, and Tower Hamlets’Disability Resource Centre deals withsitting and accessible leisure provision.

Leeds also keeps its special-needs sittingand home-based care scheme separatefrom its short break scheme. The sittingscheme can be directly accessed byparents and is often the first point ofcontact for support to families. It is nowoperating to full capacity and needs toexpand. It is worth noting that this shortbreak project is finding that it is notcheaper to provide sitting services, as thehourly rate paid to sitters is higher thanfor short break carers.

Barnardo’s Newham project introducedsitting services in 1996, two years after theproject was launched. This has proved sopopular with parents (who seem to feelthat this service will be more accessible)that there is substantial unmet need. The

project has applied for and received extrafunding to deal with the unmet need, andcan now offer sitting services to morefamilies.

In common with other schemes,Barnardo’s Hamara project inWalthamstow reports:

“… a continuing demand fromparents … the sitting service hasexpanded from 40 in 1998-99 to120 this year [2001]. We also havea waiting list. The flexibility of theservice – siblings can be cared for,children can be taken out, invasivecare can be offered etc – and theskills and continuity of the sittersseem to be the features of theservice valued most by parents.”(Hamara)

Flexibility of provision in some schemesextends itself to after-school and holidayplay schemes, advocacy/befriendingschemes, holiday clubs and leisuregroups. These are best run with the aimof supporting disabled children andyoung people to take part in activitieswith non-disabled young people.Barnardo’s Hamara project inWalthamstow, for example, has a widerange of provision, including those justmentioned, and also analyses users ofeach of them by ethnic group.

Family Link in Newham sends newslettersto and consults with all families on thewaiting list, as well as those in receipt ofservices. This demonstrates that they arevalued and keeps communication open.

We asked schemes about their use ofDirect Payments, schemes whereby olderdisabled young people and adults candirectly employ someone to providepersonal assistance for them. We foundthat schemes are aware of this but that

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the implications for their services are notyet clear. This area is worth someattention as there is evidence of low take-up by adults from minority ethnic groupsdue to many of the barriers Black familieswith disabled children face to accessingservices (Butt et al, 2000). Severalschemes commented on the lack of sittersfor ‘older’ young people, especially youngmen, and it could be that Direct Paymentswill provide a way for them to employpeople from their own networks as sitters.

Direct Payments can be seen as providingan alternative to short breaks. The reportWhatever next? Young disabled peopleleaving care says: “The Government havesuggested that this [Direct Payments to16- and 17-year-olds] might alleviate theneed for short break services for somefamilies” (Rabiee et al, 2001).

Facilitate support groups

Barnardo’s Hamara project workers inLondon reported that they facilitatesupport groups for African, AfricanCaribbean and Asian parents in the areathey serve. The project also has supportgroups for Black short break carers thatmeet every month. Sense (see page 29)has a national minority ethnic networkand a local support group for minorityethnic families in Manchester. Shortbreak carers in Liverpool are offered theopportunity to be part of a Black carers’support group. In Bradford, a group isfacilitated by an Asian social worker andthere is also a self-help group. In Barnet,a primary school for disabled children hasa parent-organised sitting circle. Aresidential ‘respite’ facility has also beenset up by parents and is now funded bythe local authority. It is a purpose-builthouse with eight to ten places(information on minority ethnic groups

What works?

using these facilities was not provided).It is worth bearing in mind that in areaswhere Black families are in a numericalminority, attending all-White supportgroups can be difficult and needsaddressing.

Review and evaluate

Monitoring, reviewing and evaluating theprovision of services are now required bycentral government. Equalities legislationand guidance is now much more‘mainstream’ and is finding its way intogeneral monitoring processes. Managersare sharing responsibility for the process,rather than it being a separate activity ofan Equal Opportunities Unit. This trendis reflected in a number of schemedocuments that we obtained. Six out ofthe 13 schemes have evaluated theirexisting services for Black families.

A number of shared care schemes thatprovide services to Asian families areinvolved in a benchmarking exercise –those in Bradford, Bolton, Tower Hamletsand Newham.

Barnardo’s in Liverpool has carried out aformal evaluation of its Blackdevelopment work, two years after theappointment of its first Black worker. Atthe time of writing, it is due to bepublished.

The Leeds scheme had recently carriedout a postal survey of all families usingthe short break scheme, and Barnardo’sNewham has built in service evaluationsas part of carer and service reviews withfamilies.

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Short breaks

Train and develop staff, carersand short break panel members

Promoting equality and workinginclusively are skills that need to belearned by some and continuouslydeveloped in everyone. Recruiting staffwith these skills in the first place is ideal,but staff development, supervision,management and training is essential todevelop these competencies in theworkforce.

The Leeds Family Placement scheme andBarnardo’s North West Fostering inLiverpool both organised staff training inequalities and anti-racism practice beforea Black worker was appointed. A Blackdisabled woman ran the training in Leeds,so bringing a range of perspectives andexpertise to the work. The Liverpoolproject leader also wrote that, “ongoingtraining in managing diversity and culturalawareness is essential for staff”. Thisproject also acknowledged that the issuesmight be different for projects workingwith a sole Black staff member, andsought advice and built this aspect into itstraining.

In Liverpool, carers also receive equalopportunities training, as they do in manyother projects that replied to ourquestionnaire. A number of schemesoffer carer training in a choice oflanguages – some in gender-specificgroups. Accommodating carer needs andcircumstances gives clear messages thatthe service will value their skills. Theshort break carers interviewed directly forthis work said they valued training verymuch. In particular, their level ofawareness about disability had beenraised, and they had lost their previousfear of disabled people and impairment.Carers in a recent survey also foundtraining valuable as a way of “building

non-judgemental, appropriate andprofessional attitudes” (Prewett, 2000, p48).

Network and share informationand practice

Some of the schemes had benefited frompooling experiences and strategies withothers. Shared Care Network is a goodcatalyst for this, and can arrange nationaland regional events. The benchmarkingexercise, undertaken by four short breakschemes and mentioned earlier, providesan opportunity for discussion of practiceas well as setting standards. TheBarnardo’s scheme in Liverpool hasnetworked with others in the North Westof England.

Prioritise culturally competentpractice

All the components of practice mentionedin this section of the book go towardmaking up culturally competent practice.When discussing barriers to access forfamilies, it is easy to spot examples ofracism, stereotyping and lack ofcompetence.

A recent initiative in cultural competencehas developed a ToolKit for personnel,available from the organisation below.The stages that it proposes organisationsshould work through are as follows:

1. Who are we here to serve? (communityprofiling)

2. Who are the users? (ethnic monitoring)3. Who does what? (organisational

responsibility)4. Involving the user (public involvement

in decision making)

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5. Working with others (partnerships)6. Respecting, accepting and celebrating

diversity (multicultural awareness)7. Respecting and valuing staff (human

resources issues)

Each section is followed by a set ofmaintenance, developing and actionplanning templates, which supportindividuals, teams and organisations inmoving forward. In this way they aidprofessional and/or team developmentplans. For further information on theToolKit, go towww.culturalcompetence.org.uk.

An openness and willingness to reflect onpractice and improve it, as well as seekand take advice from Black people, areprerequisites for cultural competence.Another fundamental principle is, ‘If youdon’t know, don’t assume, just ask’.

What works?

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Short breaks

5Recommendations

Good coordination, dissemination andimplementation of theserecommendations will be important. Anoverarching recommendation is thereforethat a national organisation (such asShared Care Network) is funded tooversee, campaign for, disseminate anddevelop practice, particularly ingeographical areas where Blackpopulations are relatively small, andwhere short break services are relativelypoorly resourced. This national role, withassociated personnel, could also developsupport for Black short break staff andcarers, and network with organisationssuch as Barnardo’s, which alreadyprovides some of this.

For central government

• Guide local authorities to ringfencemonies allocated through governmentprogrammes such as Quality Protectsand Children First so that they identifyand specifically target under-represented groups – for example, byallocating specific worker time tooutreach activities.

• Encourage local authorities to activelymonitor their services to ensure theyare ethnically representative by making

this a key feature of Social ServicesInspectorate inspections.

• Many central government initiativessuch as Quality Protects and HealthAction Zones are short term, andservices are dependent on them forresources needed to encompassdiversity in services. This situation islikely to continue unless active policydecisions are made to bring suchmarginal and short-term initiatives intothe mainstream.

• Issue guidance to local authoritiesregarding their responses to the 2000Race Relations (Amendment) Act thatencourages them to actively promoteservices to Black and minority ethnicfamilies and to encourage partnershipworking. Specifically mention shortbreaks for families with disabledchildren and young disabled people inthis guidance.

• Encourage local authorities to monitortheir referral and assessment processesto see how services to disabledchildren and their families are meetingthe needs of Black disabled childrenand families.

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For local authorities

• Know the population you serve.Ensure ethnic monitoring and recordkeeping is implemented, updated,reviewed and monitored. Use theinformation continuously to improveservices and target under-representedgroups.

• Ensure that your equal opportunitiespolicy includes disabled children fromBlack and minority ethnic groups, andthat specifically brings togetherdisability and ethnicity. Use theguidance provided by The EqualityStandard for Local Government and theproposed Best value performanceindicators 2002-2003 (DTLR, 2001) tohelp you set goals.

• Target increased access by Blackchildren and their families when actingon the Quality Protects sub-objective toincrease the provision of short breaksto disabled children and their families.

• Include the views of Black disabledchildren and young people inconsultation and planning.

• Consult with a range of Black andminority ethnic families, includingchildren and young people, beforesetting up new schemes or otherservices, recognising that ‘culture’varies from family to family andchanges over time.

• Ensure that regular feedback isobtained from Black users and carers(including children and young people)on access to services and on howappropriate they feel they are.

• In children’s services planning, ask thatshort break services specify how theyare ensuring take-up by Black minorityethnic groups.

• Examine the funding base of servicesinvolving Black families. Is the fundingan integral part of mainstream services,

or is it short term, insecure and seen asan ‘add-on’?

• Use opportunities presented by newlegislation and policy (for example, the2000 Race Relations (Amendment) Act,the 2000 Carers and Disabled ChildrenAct and the Valuing people initiative[DoH, 2001e]) to strengthen servicesand affirm your commitment toinclusion.

• Even if contracted out to voluntaryagencies, the referrals of families oftenhave to go through the local authority.Yet there is evidence of stigma attachedto social work and local authorityservices that can prevent Black familiesfrom wanting to use them. Considerreferrals in different ways – via familiesthemselves, community groups or othertrusted routes.

• Audit or review workforce recruitmentacross your services. Identify gaps andinequalities. Identify if, and why, somegroups are under-represented in theworkforce.

• Proactively promote social work totarget communities – both to aidrecruitment and alleviate anxieties, andto dispel myths about services.

• Network with other local authorities toshare good practice and get ideas. Theprocess and principles of inclusion aresimilar whether or not you have a largeBlack population. Research has shownthat, in advancing effective services, it isleadership that counts more than thesize of the local authority or the size ofethnic groups.

• Interpret short break services flexibly.Sitting services are consistently provingpopular with Black families, and inparticular with South Asian families.Make sure your service can encompassthis in planning.

• Attention is increasingly being drawnto the need for male sitters and carers.Take this seriously and investigate thepotential.

Recommendations

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Short breaks

For the providers of short breakschemes

• Inclusion is a process. There can neverbe enough of it, and who needs to beincluded is constantly changing. Theorganisers of the best schemes realisethat there is no ‘quick fix’ and will justkeep on trying and changing what theydo, and how, accordingly.

• Ensure you have clear equalopportunities policies and proceduresthat are understood by schemeemployees, volunteers and serviceusers alike, and that these cover accessto services and user involvement.

• Leadership and teamwork areimportant. All scheme staff shouldshare responsibility for access and theinclusiveness of services. Regulardiscussion of what this means iscrucial. In particular, there is a dangerthat lone Black workers becomeresponsible for ‘minority ethnic’ work,and can therefore be marginalised.

• Review the referral processes andassessment procedures used, and checkthey do not discriminate against andexclude Black families. This particularlyapplies to referral and assessmentpanels. In order to do this well, youmay need to take advice from Blackpeople. Can you consider self-referralfrom families in under-representedgroups?

• As a way of increasing access, do notunderestimate the value of outreachand development work, with cleargoals and targets.

• Include sitting services and otherhome-based provision in your plans.Some Black families prefer them.

• Keep checking out the assumptionsabout families and culture upon whichyour service is based. If in doubt, askpeople what is right for them.

• Examine the make up of your scheme’sworkforce and carers. Are theyrepresentative of the communitiesbeing served? If not, how could theybe made more so?

• Consider the balance between womenand men. The recruitment of malecarers is proving successful in someschemes and can be enabled byrecruitment of male project staff.

• Build on your successes. For example,even one Black family using a scheme,or one Black carer being recruited, canintroduce you to others and provideyou with a way into a previouslyexcluded community.

• Prioritise the goal of a diverse group ofcarers, and check that your recruitmentprocesses do not exclude ordisadvantage particular groups; forexample, at the panel approval stage.

• Provide support for all staff whilerecognising that Black staff may haveadditional support needs.

• Training should draw on the views ofservice users and under-representedgroups. Training for culturalcompetence should be continuouslyavailable.

Gaps in local and nationalknowledge

In order to fill current knowledge gaps, itis essential that researchers, localauthorities and other providers takeaction in the following areas:

• Detailed knowledge of the differenttypes of short break services used(especially sitting services and alsonon-family-based provision), thepatterns of use by different ethnicgroups and by children’s age, genderand impairment, and the geographical

45

location of each provision. Aggregatedinformation is not always helpful.

• Qualitative data on the perceptions byBlack families of social work services,linked to patterns of use.

• Evaluation of kin recruitment as shortbreak carers, sitters or befrienders,exploring outcomes for children andaccess to services by Black families.

• Take-up of direct payments by Blackfamilies with disabled children, and byBlack disabled young people.

• Under-representation of African andAfrican Caribbean children and youngpeople in short break care comparedwith their presence in institutional,long-term residential care.

• Over-representation of Black childrenfrom some ethnic groups in special(segregated) schools.

• Experiences and needs of otherminority ethnic groups (Chinese,Jewish, Traveller, Irish, for example),and refugees and asylum seekers.

• The role of men – as fathers, as carersand as children’s services staff.Currently ethnic by gender data is oftenmissing.

• Perceptions of social work in someBlack communities and how moreBlack people might be encouraged tojoin.

• Collating and sharing good practice inlocal authorities with ‘small’ Blackpopulations: work in Scotland, Walesor Northern Ireland could beparticularly helpful.

Conclusion

Arguably families from Black and ethnicminority groups who have disabledchildren are among the mostdisadvantaged and isolated in Britain. Inthis report, I have reviewed their currentposition in regard to gaining access to,and choice of, short break care.

It is clear that policy and practice ischanging rapidly and these changes drawon a growing recognition that the needsof Black families have been marginalisedand neglected. Barriers still remain,however, largely as a result of institutionaldiscrimination that results in servicesfailing to address diversity of need. Thereis no alternative to time being invested inlocal research and outreach work. Thislocal development work could benefitfrom having an organisation taking on anational coordinating and disseminatingrole.

There is some understanding of theanxieties of families regarding culturallycompetent practice and, in particular,their fear of children being removed fromthe family, even for just one night. Alsothere is a growing appreciation of theimportance of support services beinggrounded in, and reflecting, the diversityof local communities. This hasimplications for the appointment anddeployment of staff.

There is much to be learnt from thevarious successes of the schemes thathave featured in this review. I havedrawn out some of these lessons and Irecommend them as a way forward in thefurther development of community-basedsupport services. Short breaks can makea significant contribution to the care ofBlack disabled children and youngpeople, but they need to be continuallyopen to interpreting and changing what‘short breaks’ can mean. As the situationchanges, then, there will be a need forsome kind of follow-up review, perhapsin three to five years’ time. This kind ofpractice-related research is an integralpart of the developmental process inservice provision.

Recommendations

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Short breaks

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