Short Breaks: Providing Better Access and More Choice for Black Disabled

Short breaks Providing better access and more choice for Black disabled children and their parents

Ronny Flynn

The•POLICY P P PRESS

i Short breaks

First published in Great Britain in May 2002 by

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

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ii Contents Acknowledgements vi Executive summary vii

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

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

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

iii Short breaks

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

•••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••••• 5 Recommendations 42 For central government 42 For local authorities 43 For the providers of short break schemes 44 Gaps in local and national knowledge 44 Conclusion 45

iv “Many Black people do not know about such services or do not want social services’ involvement. They tend to struggle on and only seek outside help when they reach breakdown.” (African Caribbean short break carer) “Parents don’t have close family to help. They need a lot of encouragement to use services for short breaks. I was encouraged by the previous headteacher of my child’s school.” (South Asian mother)

v Short breaks

Acknowledgements

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

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

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

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

Members were:

Nasa Begum Sue Mennear Tracey Bignall Mahera Momin Mike Corrigan Beth Tarleton Ricardo Estee-Wale Robina Shah Rob Hawkins Justin Simon Christine Lenehan Emma Stone Marion Lowe Julie Thompson Kamila Maqsood Linda Ward

Thanks also to everyone who attended the consultation and networking event in September, 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, London Tower Hamlets and Liverpool, worked with us flexibly and cooperatively.

vi Executive summary

The term ‘short break’ has been used to • to clarify and explain strengths and describe a range of services that have weaknesses in how families gain access developed and changed over time. These to provision; are referred to variously as ‘respite care’, • to highlight any differential take-up of ‘shared care’, ‘family link’, ‘short-term the various forms of provision; break’ and ‘short-term care’. ‘Sitting • to locate gaps in provision and services’ and ‘befriending schemes’ are problems of access to provision; types of services that are now included as • to locate existing networks in the field, short breaks. Prior to 1976, when the first and recommend ways in which family-based schemes were pioneered in networks can be formed, adapted or Leeds and Somerset, these services were strengthened; usually based in institutions. In contrast, • to recommend research, practice since the 1990s, short breaks have been initiatives or changes in policy that can provided mainly through family-based improve access to short breaks. services. Family-based short breaks involve carers being approved as foster In order to identify and summarise key carers to have a disabled child in their findings and recommendations for policy own home, usually for one weekend a and practice, I have reviewed UK month. The model has now broadened literature going back some 15 years. considerably to include daytime services in children’s own homes and other kinds In addition, the following fieldwork has of provision. been undertaken to supplement the literature review: This project has a number of aims: • In Scotland, nine disabled children and • to review literature on short breaks for young people of South Asian1 and disabled children specifically from Black minority ethnic groups; • to summarise recent and current 1 In this report, ‘South Asian’ is used to refer to developments as outlined in the people whose origins are in India, Pakistan, literature; Bangladesh or Sri Lanka, or any of the • to identify good and innovative aforementioned whose families have lived in practices from the literature and in African countries for a substantial period of front-line work; time.

vii Short breaks

Chinese origins were interviewed about that it is the responsibility of service their lives and use of services. (A providers to try to be inclusive. summary of the report by Vijay Patel is included in this publication). Researchers too are aware that the • Two parents and three carers involved inclusion of Black families is essential in in family-based short break schemes were policy and practice-related research, and interviewed in London and Nottingham. that the omission of them from samples is Two short break carers from Dudley increasingly an embarrassment. The were also interviewed. Carers and English government has introduced parents were of African-Caribbean and compulsory ethnic monitoring in South Asian origins. children’s services, and there is an • A postal survey of 24 family-based expectation under the 2000 Race Relations short break schemes was undertaken to (Amendment) Act that services in all UK gather information on policies and countries will demonstrate how they practices and ‘what works’. Details promote racial equality. It will no longer were obtained from 13 such schemes. be assumed that they do so.

From these 13, six schemes were either Disabled children are also becoming visited by one of the research team, or in- more ‘noticeable by their absence’ and depth telephone interviews were carried services are increasingly expected to cater out with project managers. for disabled children as part of their provision to all children. The 2001 Special Educational Needs and Disability Policy and practice Act, for example, sets an expectation that children and young people with special educational needs will be educated in There have been changes in the past 20 mainstream schools, and that disabled years to the way research, policy and pupils shall not be ‘substantially practice in children’s services considers disadvantaged’ in their education. disability and ethnicity. The social model Disability and ethnicity are also beginning of disability has influenced children’s to appear together on the same agendas – services (Marchant, 2001) and the for example, in English government disability movement has been policies such as Quality Protects as well instrumental in the move from as in research and local statutory and institutional to community care (Oliver, voluntary sector practice. Policy changes 1996). in Scotland are suggested in a number of commissioned studies mentioned in Vijay It is no longer acceptable for agencies to Patel’s report, but we were only able to develop services without paying attention find evidence of a few initiatives in Wales to the ethnic composition of the and Northern Ireland. population to be served; or, if particular ethnic groups do not use a service, to conclude that “they don’t need it” or that What helps access? “we’re here – it’s up to them to come and find us”. There is more acknowledgement now of how Agencies are more likely to be inclusive if institutional racism may have operated to they acknowledge that their routine keep these families out of services, and practices may be excluding some families,

viii Executive summary

and that they need to identify and target children is a recurring theme. The under-represented groups. Crucial in terminology used just to describe a promoting access seem to be: service such as short breaks can be confusing and off-putting to some • knowledge of, and consultation with, parents, especially when it also seems to the local community; be frequently changing. Agencies are • effective ethnic record keeping and unlikely to be inclusive if they fail to monitoring; acknowledge different needs, and insist • the existence and active use of equal that they ‘treat everyone equally’ without opportunities and anti-racism policies and examining what this means. Similarly, it procedures; is important to recognise and develop • clear commitment, leadership and strategies for different communities within resourcing. the locality – for example, for different African or South Asian communities. Community relations are also important, as is the appointment of staff from the Poor communication between service minority ethnic groups that the services providers and users, leading to are trying to reach. Both are significant in misconceptions about the role of short building trust between services and break services, is common. Some communities, and in dispelling myths services were developed with a about social work being about stigma, monocultural user group in mind, intrusion and the removal of children resulting in cultural features that make from families. some parents reluctant to use them. Some services lack the policies, It is also evident that it helps if agencies appropriate personnel and leadership to provide clear explanations about the reach out to minority ethnic families. differences between services, assessment, Racism, narrow definitions of what need and entitlements. Linked to this is services offer and inflexibility about who the ability for services to be culturally might provide them also serve as barriers competent. This includes being alert to to take-up. racism, and continually reviewing and improving their practices. Consultation with minority ethnic groups is crucial. Recommendations Services should be prepared to seek advice on need and be finding ways of meeting it flexibly – for example, by A detailed list of recommendations for increased use of sitting services. central governments, local authorities and Networking with other providers is providers of short break schemes, along important. In most communities, there is with key gaps in knowledge (local and a great deal of expertise. national) is provided at the end of this report. A Joseph Rowntree Foundation (JRF) Findings summarising the key messages from this report is available What are the barriers to access? from the JRF and on the JRF website: www.jrf.org.uk.

Lack of information about the different services for families with disabled

ix Short breaks

x 1 Setting the context

The needs of black children were and what can assist services in addressing more likely to remain unmet this unmet need? compared with white children. This effect was consistent across The views of Black disabled children (and the whole range of needs covered disabled children overall) were not well by the questionnaire. Similarly, represented in the literature on access to there were higher levels of unmet short breaks by disabled children and need among black parents their families, so the bulk of the compared with white parents. Of information is obtained from parents and particular note were unmet needs other carers, and from service providers. related to information about The term ‘families’ is often used when it services. (Beresford, 1995, p 35) is the child’s parents who are consulted; sisters, brothers, relations and other kin The majority of parents said they are rarely included. Authors such as Jenny needed more breaks from caring Morris and Ruth Marchant have written for their child but most did not use extensively on the need to consult with short-term care services. Many disabled children and provided were unaware that such services suggestions for what can work (Morris, might be available in their area 1998a, 1999; Marchant and Martyn, 1999; while others had chosen not to use Marchant et al, 1999). such provision. (Chamba et al, 1999, p 25) The decision to focus on this aspect of services for disabled children and families More short-term care and holiday stemmed both from a gathering body of play schemes should be made research that has identified low take-up of available which meet the cultural, short breaks by minority ethnic families, linguistic and dietary needs of and from research funded by the JRF, parents and children. (Chamba et specifically by Bryony Beresford (Expert al, 1999, p 33) opinions, 1995) and by Rampaul Chamba and colleagues (On the edge, 1999). These quotations summarise the issues at Beresford’s research had only included the heart of this review. Is there the experiences of 94 parents from continuing unmet need for short breaks minority ethnic groups in a study of 1,142 among Black families? If so, why is this, families. The subsequent study by

1 Short breaks

Chamba and colleagues sought the views other and are not always dependent on of some 600 parents of African Caribbean, services being ‘handed down’ by Indian, Pakistani and Bangladeshi origins professionals. But with access to who cared for a ‘severely disabled’ child. appropriate resources and support, they It represents the most comprehensive can do so much more for their children study of Black families with a disabled and young people. child to date.

In both studies, a substantial mismatch Aims and scope of the study was found between parents’ need for short break services and their actual use of them. Many families who did not use This project had a number of aims: these services did not know they existed. Other families faced barriers to accessing • to review literature on short breaks for available services such as level of disabled children, specifically from speaking and comprehending English, minority ethnic groups surveyed by and the appropriateness of the service. Chamba and colleagues, whom we Short breaks had consistently been define as ‘Black’; viewed as positive and desirable by • to summarise recent and current parents, yet take-up was patchy and by developments as outlined in the no means universal. literature; • to identify good and innovative The JRF wished to have more detail on practices from the literature and front- this area of unmet need and so funded line work; this review of literature and practice. In • to clarify strengths and weaknesses in producing this document I have how families gain access to provision, concentrated on minority ethnic groups of and reasons for these; South Asian, African and Caribbean • to highlight any differential take-up of origins whom I have defined as Black, the various forms of provision; but I acknowledge that other minority • to locate gaps in provision and ethnic groups (such as Chinese, Jewish, problems of access to provision; Irish and Traveller people) face similar • to locate existing networks for services situations over access, and they too are to Black families in the field, and under-represented in research. Disabled recommend ways in which networks refugee children also are a neglected can be formed, adapted or group. strengthened; • to recommend research, practice By focusing on what needs to be done to initiatives or changes in policy that can ensure that Black disabled children and improve access to short breaks. their families receive services they are entitled to, it has been necessary to focus The review covers literature relating to on institutional barriers and other England, Wales, Northern Ireland and negative aspects. It is not my intention to Scotland, though the case examples of portray Black families as ‘victims’ but to short break schemes are located in acknowledge the effects of racism and England only. exclusion on the quality of life for many families. Members of Black communities In Northern Ireland, services are do get on with their lives, support each beginning to address minority ethnic

2 Setting the context

inclusion but, as yet, disability and inclusion. Terminology in reports is ethnicity are rarely considered together. therefore inconsistent and has changed However, there are indications that this over time. Researchers, funders and could happen in the near future. Two service users have different preferences reports on minority ethnic needs in and the language of legislation, policy Northern Ireland mention that the needs and practice may be different yet again. of children with learning difficulties are This report favours the use of terms just beginning to be highlighted: the consistent with the social model of Northern Ireland Council for Ethnic disability, which avoids defining a child Minorities (NICEM, 1996) notes of the by her or his impairment, thereby locating Indian community, “We are beginning to ‘the problem’ within the disabled person, learn about small groups within our but focuses instead on removing disabling community such as children with learning barriers to quality of life erected by disabilities and the elderly”; and the society’s attitudes to disability (Marchant, Chinese Welfare Association and 2001; Mir et al, 2001). Barnardo’s Northern Ireland (1998, p 26) note that one of the most common This report also uses ‘Black’ in a unifying problems from caseloads in the Belfast sense to refer to people of African, area related to child-focused issues and Caribbean and South Asian origins, and reported by Lay Health Workers was distinguishes between different minority learning disabilities. In Scotland, ethnic groups where possible. However, interviews were carried out with nine ‘Black’ and ‘Black minority ethnic’ are Black disabled children, focusing on sometimes used interchangeably. It is friendships, pastimes, likes and dislikes, accepted that White minority ethnic religion, culture and language. Short groups can also experience racism and breaks were not specifically featured in cultural and religious oppression, but that Scotland as it was felt that comments on racism based on skin colour adds a access to wider services would be more different dimension. However, where we appropriate for Black families at this point have information on some groups in in time. relation to short breaks – for example, Chinese families – who are sometimes In Wales, we were unable to find much included in definitions of ‘Black’ and literature on short breaks for minority sometimes not, the group has been ethnic families. A report by Beth Prewett included. on children’s shared care services only had two Black children recorded out of the 540 in the survey (Prewett, 1999b). Short breaks: definitions and debates However, a report by Jaswant Singh for Barnardo’s in Cardiff has raised identical Prior to 1976, short break services were issues to this review (Singh, 1992). There usually referred to as ‘respite care’. They are gaps in information regarding the were institutionally based and run situation in Wales that need to be filled. predominantly by the health or social services. The introduction of family- based short break services in 1976 Language of disability and ethnicity seemed to be welcomed by parents and this provision grew enormously during The language of disability and ethnicity the 1980s. In the 1990s, short-term care reflects changes in awareness and seemed to be taken universally to mean

3 Short breaks

family-based services, and it has enjoyed short break schemes and the reason why increased levels of government carers take on the work, it is important recognition and support (Prewett, 1999a). that these debates are heard.

Some family-based services involve the If services and society removed disabling disabled child being cared for outside the barriers, children could be accommodated home – typically the child leaves the without separate services. Also there is a home to stay somewhere overnight stigma attached to these services, as they (Morris, 1998b). Breaks outside the home are only offered after an external can also involve using leisure facilities or assessment of family need is carried out taking part in a range of social activities rather than being offered as a matter of with other children. Other provision right (for an elaboration of these points, includes support in the child’s home see Marchant, 2001, and Morris, 1998b). while family members go out or choose Sometimes these schemes have been set to spend time in other ways (Stalker, 1991 up without consulting children, young and 1996 describes the development of people and their families. Because they short break services). are now part of a system, they can be resistant to change. And families may There is debate about who short break have to fit in with what is offered rather services are really for. There is no doubt than being able to request services that of the commitment, skills and enjoyment meet their needs. of short break carers doing the job, and the positive feelings and experiences of It is only relatively recently that disabled the many children who use short breaks children and young people have been (Prewett, 1999a). consulted about the services and support they would like, and prepared for the However, it has been argued that the term services they receive. They ‘short breaks for disabled children’ is overwhelmingly want to do the things misleading and discriminatory, as its non-disabled children and young people concept and origins are parent-centred; a do. They acknowledge the need for them service requested by parents not children, and their parents to have a break from and offering the adult carers ‘a break’ each other, and enjoy their time with (that is, ‘relief’) from the child. It sets carers. They make new friends and take disabled children apart from their sisters part in a range of social opportunities. and brothers and friends, who do not But they generally miss their families have their time away from their family when away and do not want to be apart described as ‘short breaks’; and who, from them for too long (the views of moreover, are not able to go with the disabled children and young people are disabled child on these short breaks summarised in JRF, 2001a and the (Marchant, 2001, p 218). It has also been Children’s Society, 2001). argued that a whole ‘short break industry’ has developed that creates jobs for local The study carried out in Scotland with authority and voluntary agency staff, and nine children and young people pays allowances to non-family members highlighted these and other messages: of a child to care for them, and that this can have the effect of undermining the • Like all children their age, they want to family (Cocks, 2000, pp 509-10). While do things that other children do. They this is clearly not the intention behind are not asking for more, but the same

4 Setting the context

access as their peers. Their impairment Council for Disabled Children (CDC) prevents some adults from stated that: acknowledging that they have the same needs as non-disabled children. Respite or short-term breaks has • The education setting was a positive been an important component of place for all the children and this family support within all local clearly related to its focus on their authority planning structures and abilities and not the effects of their has been universally regarded by impairments. parents as essential. But despite • All had friends, but few were able to the positive messages emerging maintain contact outside the from a number of reviews of educational setting (Patel, 2002). respite care, anomalies and challenges remain for purchasers, There is frequent change in the providers and service users. management and aims of short break (DoH/SSI/CDC, 1998, p 48) services, and tensions inevitably arise in the attempts to balance the needs of the Other SSI reports have identified gaps in different parties involved (children, provision of services for Black families parents, short break carers, project staff, (DoH/SSI, 1994, 2000). and so on) while keeping the goal of child-centred services in sight. But the The Quality Protects initiative in England inclusion of disabled children’s voices and specifies as one of its sub-objectives that the voices of other marginalised groups services should “increase the number of brings different kinds of change – disabled children in receipt of family centrally to do with the shifting of power support services – including short-term and control to service users. Listening to breaks” (DoH, 2001a). these voices and acting on them may make a real difference to the shape of The English government’s 1998 Sixth services. Objective for Children’s Social Services (DoH, 1998) concerns disabled children, and the Quality Protects programme Legislative and policy context requires that local authorities prioritise short breaks and “ensure that services are appropriate for ethnic minority This is a time of much change in public communities”. The Third annual services. There are currently many overview report of the Quality Protects legislative and policy initiatives within programme notes that very few of the which this review is located. Some of the Management Action Plans included recommendations in this review are systematic accounts of how councils were already being addressed. meeting the special needs of Black and minority ethnic disabled children. They noted that overall this was a relatively Children’s services underdeveloped aspect of work (DoH, 2001b, p 62). The Quality Protects In 1998, a report by the Department of programme now requires local authorities Health (DoH), England and Wales Social to allocate monies to services for disabled Services Inspectorate (SSI) and the children. It also requires them to specify how each objective will meet the needs

5 Short breaks

of disabled children and their families, reviews service developments regarding and the needs of Black and minority ethnicity and disability, and notes that ethnic groups in their area. Objective 6 progress has been relatively slow to date of the Quality Protects Disabled Children’s but that there is optimism for the future. Objectives and Sub-objectives has been He observes that issues of racism and revised to specifically include expenditure diversity have tended to remain invisible on short breaks and ensuring services are within a policy context, and that a major appropriate for minority ethnic review of learning disability, The same as communities (DoH, 2001c). you (CRU, 2000) by the Scottish Executive, while providing a number of In Wales, the Children First Programme good recommendations, did not touch on Guidance for 2001-02 specifies short the issues. However, it is hoped that this breaks for inclusion in local authority will change in the next few years with the revised Action Plans, albeit with no introduction/implementation of the apparent mention of minority ethnic following: groups (National Assembly for Wales, 2000). • 2000 Race Relations Amendment Act, which sets out new requirements for In December 2001, the Northern Ireland public services; Executive published its Programme for • 2001 Regulation of Care Act, which government. This has gone some way introduces a new commission to toward putting ethnicity on the agenda in inspect social care services in services, and the Programme does accordance with an agreed set of acknowledge that “people from ethnic national care standards; minorities and people with disabilities • Race Equality Action Forum action plans experience particular difficulties in for the Scottish Executive – a set of accessing some public services” (Northern recommendations to ministers, which set Ireland Executive, 2001, pp 135-6). out plans to mainstream race equality NICEM, the voluntary sector, membership- within the Scottish Executive and based umbrella organisation, is further afield (Patel, 2002). representative of the Black and minority ethnic sector in Northern Ireland. So most of the UK nations are addressing Following its submission in response to ethnicity and disability, though not all are the draft Programme for government in bringing the two together yet, or setting November 2001, some of NICEM’s specific objectives with ring-fenced concerns (about data collection on resources. All have frameworks within ethnicity and evidence of racism in public which they can locate initiatives. attitudes) seem to have been addressed. The Children’s Task Force, which will In Scotland, the 1995 Children (Scotland) oversee the development of the National Act brought Scotland in line with England Service Framework (NSF) for Children in in relation to the requirement that local England, is committed to inclusion and authorities need to pay heed to a child’s participation. The NSF will explicitly racial, linguistic, cultural and religious cover disabled children. The relevant persuasion. It also brought in many section states: aspects of the United Nations’ Convention on the Rights of the Child. The research Taskforce projects should give in Scotland, carried out by Vijay Patel, special care to ensure participation

6 Setting the context

is inclusive and reaches children Regulations. However, although direct and young people from black and payments may offer more choice and ethnic minority groups. Care flexibility for parents, it is not yet clear should also be taken to ensure how they will operate within existing inclusion of disabled children, and children’s services. In addition, relatives representation in terms of age and are excluded from being paid as ‘carers’ gender. The work being under this scheme except in “exceptional undertaken by the Children’s circumstances”. The legislation also Society provides an excellent provides for local authority social services model for other projects starting departments to run short break voucher work with disabled children. schemes. Voucher schemes are designed (www.doh.gov.ukchildrenstaskforce/ to offer flexibility and choice in the way participation.htm) services are delivered to persons cared for, while their usual carer is taking a The Audit Commission is currently break. Guidance for the Carers Special carrying out a survey of services to Grant, which in Year 2 (2000/01) included disabled children that could provide caring for disabled children and young valuable information about short breaks people, has asked English local (Davies, 2001). authorities to record any specific developments for carers from minority At the time of writing, a new consultation ethnic backgrounds. In Year 3 (2001/02), strategy from the Children and Young agencies are being asked to publicise any People’s Unit includes among its difficulties relating to short breaks. principles those of equitable, inclusive and non-discriminatory services, which all children and young people should be Learning difficulties able to have access to, and participate in, when they need them. This is a good Valuing people (DoH, 2001e), the learning basis on which to argue for short break disability strategy for England, notes the provision. barriers to participation in society faced by minority ethnic families and how these Thus in 2002 there is quite an impetus for are disproportionate in comparison with improving short break provision. other sections of the population. Specifically mentioned as areas needing attention are more short breaks and early Support for parent/carers of disabled diagnosis of impairment (which is a children and young people particular issue for some South Asian groups). Ethnicity is not mentioned here Both the 2000 Carers and Disabled in detail and not included specifically in Children Act in England and Wales and the objectives and sub-objectives as it the 2001 Health and Social Care Act allow now is in the Quality Protects guidance. for direct payments to people with The Department of Health commissioned parental responsibility for disabled a report by Ghazala Mir and colleagues, children, and also to disabled young which reviews literature on disability and people aged 16 or 17 in their own right. ethnicity and has much to say about In Scotland, there is equivalent legislation access to services and what needs to be in the form of the 2001 Community Care done. It remains to be seen whether (Direct Payments) (Scotland) Amendment Valuing people will be able to prioritise

7 Short breaks

the needs of Black disabled children and Commission for Racial Equality, the Equal young people (Ward, 2001). Opportunities Commission, the Disability Rights Commission and the Employers Organisation for Local Government. Anti-discrimination and human rights Suggested best value performance legislation indicators for 2002/03 include compliance with the Equality Standard, the number of The 1998 Human Rights Act is linked to Black and minority ethnic staff in senior the European Convention of Human management, and those users/carers in Rights, to which the UK is a signatory. social services who said that matters The United Nations Convention on the relating to race, culture or religion were Rights of the Child is international noted by service providers. legislation that aims to promote all children’s rights and protect children and young people. All four UK countries are covered by this legislation. Services to disabled children from minority ethnic groups and their families are also covered by anti-discrimination legislation. All four UK countries are covered by the 1995 Disability Discrimination Act. The 2000 Race Relations (Amendment) Act in England and Wales, and the same in Scotland, will require public services to show how they promote racial equality – a more active requirement than before. In Northern Ireland, the 1997 Race Relations (Northern Ireland) Order makes it unlawful to discriminate against anyone on the grounds of race, colour, nationality, or national or ethnic origin. The international context is therefore one that is compatible with the work carried out in this review.

Regarding anti-discrimination, Best value performance indicators 2002-2003 has strong performance indicators relating to equality that specify racial and disability equality. These should greatly assist local services to work within a framework of anti-discrimination and inclusion (DTLR, 2001).

The Equality Standard for Local Government provides a systematic framework for the mainstreaming of equalities. It has been developed by the

8 2 What we do and do not know from existing research

In this section, I review the contribution expected social services departments to of research to the development of policy include the ethnicity of children in need and practice. Research is an integral part in their statistical returns. As yet, data on of the wider process of improving ethnicity is not required to be collected in services such as short break schemes and Northern Ireland, though data on religion so it is important to recognise that, as is. with practice, the strengths and weaknesses of research need to be Information on ethnicity is notorious for critically examined. In subsequent its high non-completion rates, and these chapters, analysis will focus on barriers to rates are not always stated in findings. accessing short break services (Chapter 3) Studies use different ways of classifying and consideration of good practice and ethnicity, not always separating out the ‘what works’ (Chapter 4). different South Asian groups, or African from African Caribbean people. It is now acknowledged that groups united under Information: gaps and limitations the political term ‘Black’ may have very different living circumstances and experiences of services, and have Information on ethnicity and disability different life chances and outcomes compared with the majority of White Information on disabled children, and on ethnic groups (Modood et al, 1997; Erens children from minority ethnic groups, has et al, 1999). In England it will be possible not been routinely collected in the past, to analyse the ‘Children in need’ Census neither by local authorities nor by data in terms of disability and ethnicity, researchers. Information specifically on and obtain valuable information. disabled children from minority ethnic groups is even harder to find. Though there is now more data available, it is still Statistics and context patchy and uncoordinated. The way information has been obtained and Figures from the 1998 England national presented in the past has varied, and it is statistics estimate 7.3% of the combined not possible to compare like with like. adult and child population are from For example, in England, it is only since groups defined as of African, Caribbean, 2000 that the Department of Health has South Asian, Chinese or ‘mixed’ origins

9 Short breaks

(ONS, 1998). In 2000 the estimated size So Black families with disabled children of the minority ethnic population was may be further disadvantaged. four million, or 7.1% of the total population. Initial estimates from the 2001 Census make this figure 10% (Singh, Sample sizes, data collection and 2001). Between 1992-94 and 1997-99 the comparisons minority ethnic population grew by 15%, compared to an increase of 1% in the Research has often been carried out with White population. Fifty per cent of the small samples of minority ethnic families, total minority ethnic population in 1997- making generalisation and replication 99 were born in the UK; the difficult. Researchers sometimes compare corresponding figure for those aged 0-14 their findings with national statistics on was 90%. The group with the lowest minority ethnic groups when local proportion born in the UK were Chinese comparisons would be more useful, since people at 25% (ONS, 2001). In Northern in some local authorities Black people are Ireland the minority ethnic population is a majority of the population. Also, an estimated as 0.9%, which includes inaccurate picture is produced when Chinese (the largest minority ethnic several schemes are aggregated. One, for group), Jewish and Traveller people. In example, may have a high number of Wales and in Scotland the minority ethnic Black users. populations are similar, at approximately 1.5% of the total population (ONS, 1998). Some studies compare their findings with The Office for National Statistics (ONS) statistics on the combined adult and child population trends for September 2001 minority ethnic population in the local show the Black (mixed) population to be area. Often it would be more useful to growing at 49% and the Bangladeshi make comparisons with the overall population to be growing at 30% (ONS, children and young people population 2001). The Black minority ethnic only, since it is often these age groups population is overall a younger that have the largest proportion from population than the White population, minority ethnic groups (ONS, 2001). and growing faster, which needs to be taken into account when researching and planning services. Lack of information on some Black groups and in some geographical areas Black families differ from the majority of the White population in the conditions in There is little detailed information on which they live. Poverty, poor housing, many aspects of Black and minority unemployment and discrimination ethnic children and families and their use disproportionately affect Black families, of short breaks. For example: with Pakistani, Bangladeshi and African Caribbean families being the most • How are they used by specific groups disadvantaged (Modood et al, 1997; JRF, such as Bangladeshi or African 1999b). There is also evidence that these Caribbean families? adverse social and environmental • How do children and young people conditions, plus issues concerned with describe their experience of such access to services, are linked to the higher breaks, and what changes would they incidence of some impairments in some like to see? minority ethnic groups (Mir et al, 2001).

10 What we do and do not know from existing research

• How is the use of short breaks break schemes, and the Norah Fry influenced by gender, or age or Research Centre, University of Bristol, impairment? have up-to-date information on family- • What are the specific needs of refugee based short break provision, but the and asylum-seeking children and current extent of non-family-based young people, another diverse minority provision appears unknown. The latest group that is only beginning to be survey by Shared Care Network notes that researched? less than 5% of schemes said they • How do the needs of Black families provided long-term care, although this is with disabled children vary between not the focus for Shared Care Network’s different localities and different parts of members (Prewett, 1999a). Anecdotal the UK? evidence from the Council for Disabled Children in London shows regional The re-analysis of the Office of variations in bed-based provision – for Population Censuses and Surveys example, 85% in Northern Ireland Disability Survey data sheds some light on compared with 30% in London – so the under-representation of African and generalisations may not be possible. African Caribbean children in short-term care, though the data for this was collected in the 1980s. The survey found Patterns of use of short break that children from these ethnic groups were more likely to be cared for away services that emerge from from home in long-term residential care research (Gordon et al, 2000). Black families with disabled children

Changes in short break services More is known about services Black families do not use than the ones they do. Reflecting changes over time in short Evidence points to low take-up of family break practice, research studies have support services by South Asian looked at different aspects of what were communities with non-disabled children once routinely called ‘respite care’ (Qureshi et al, 2000). A study of Black services. Early studies included families’ use of family centres found that residential institutional provision provided most centres were not accessible for by health as well as social services, while disabled users and that because the later studies focused more on family- administration of services for disabled based short break provision, provided by children was separate from those for non- social services and voluntary agencies. disabled children, the inclusion of More recently, home-based services such disabled children did not seem to be as sitting and befriending have become routine. This was identified as an area of popular, and this is backed up by concern (Butt and Box, 1998). African evidence from the survey of practice and African Caribbean children and carried out for this review, where they young people may be more likely to live were valued in particular by South Asian away from their families in residential families. Information on provision care. Other studies support the finding appears patchy and uncoordinated. that disabled children in general are more Shared Care Network, the national likely to live away from home as looked- umbrella organisation representing short after children, or be in residential

11 Short breaks

educational provision, than non-disabled 60% of Black families using residential children (Morris, 1995, 1998b; Gordon et institutions. Ten years later it was still the al, 2000; DoH, 20002; Abbott et al, 2001a, case, when just over half of the Black 2001b; DTLR, 2001. families in Chamba’s national survey reported using a short-term care ‘centre’, In relation to short break services, these a greater proportion than found in services have been available for more Beresford’s survey of predominantly than 25 years in one form or another, but White families (Robinson and Stalker, research studies are still finding low take- 1989; Beresford, 1995; Chamba et al, up from Black families, particularly from 1999). Bangladeshi, African and Caribbean communities. Evidence from literature of It is not clear from these studies whether families ‘choosing’ not to use services was this difference is because parents are not hard to qualify. It was sometimes clear offered alternatives to residential care, or that the reasons for not using a service if family-based services are not seen as offered were because it was disliked by desirable by Black parents. Robinson and the child, or perceived as culturally Stalker offer a number of possible inappropriate (Hatton et al, 2001). Some explanations. One is the requirement for families associated social services and families to negotiate directly with the social work with removal of their family link carers. Another is the children, or accepting ‘charity’, or as shortage of Black carers and Black link evidence that they could not cope (Shah, workers. There is then the possibility of 1992; Singh, 1992). One recent study parental anxieties about their child staying found reasonable awareness among with families who may not meet cultural health, social services and education staff and religious needs – in their study, there of unequal access to services by minority was evidence that family link carers were ethnic families and how processes they predominantly White and middle class. use might be biased and excluding of There is also the likelihood that in 1989 them (Steele and Sergison, 2001). parents lacked information on family- based provision as, at that time, it was relatively new (Robinson and Stalker, More Black families use institutional 1989). residential provision Parents in Robina Shah’s study, and also Black families (in particular those from in Hatton et al’s and Chamba et al’s South Asian groups) seem more likely to studies, expressed anxieties about the use residential provision for their cultural appropriateness of the services, children, both from health and social which may explain their reluctance to services, and less likely to use family- take them up, regardless of their need. based short break care. This finding was However, short break services are first reported by Carol Robinson and changing rapidly so this information Kirsten Stalker in 1989, with more than needs to be updated. Also we did not specifically ask for information on residential care establishments. 2 Note that, in this study, 36% of disabled looked-after children were in residential care compared with 13% of all looked-after children.

12 What we do and do not know from existing research

Unmet need: waiting lists, non-users and mostly in specialist centres managed by insufficient services social services.

There is over-representation of Black In the survey of short break schemes families on the waiting lists for family- carried out for this project by Shared Care based care, and as non-users of all short Network, nine of the 13 schemes break services (Stalker and Robinson, provided information on the ethnic 1991a, 1991b; Prewett, 1999a). composition of their waiting lists. Though some of the total numbers were small, The overall message of recent research is five schemes reported that more than 40% that there may now be more Black of families on their waiting lists were of families using short break services than in minority ethnic origin, and in one scheme the past, but there is still unmet need. this was nine out of the 11 families on the list. These were schemes that were aware It might be assumed that Black families of their responsibilities to Black families are not using family-based services and were actively providing a service for because they are using residential them, but demand was outstripping provision (as previously discussed). supply. However, Black families have also been disproportionately represented on short Rosemary Tozer undertook a study of 24 break waiting lists, and as non-users of families with more than one disabled short break services (not only family- child. Through a voluntary agency and a based ones). Beth Prewett’s recent consultant, she recruited and interviewed survey of family-based short break parents in six Pakistani families. Though schemes noted that half as many children matched by the extent of their need with were on waiting lists as were receiving the White families, none were receiving services, and that nearly 90% of schemes assistance from social services, and none had waiting lists. The reason given for were receiving any kind of short breaks. 2% of children on the waiting list was This was not true of the White families in there being a shortage of support carers her study (Tozer, 1999). Bryony from particular ethnic groups (Prewett, Beresford also identified higher levels of 1999a). This may be an underestimate if unmet need in Black families, compared lack of appropriate carers prevent with White families. In her study of more referrals in the first place (Stalker and than 1,100 parents, 94 (8%) of whom Robinson, 1991a, 1991b). Families often were from minority ethnic groups, more have to be referred to a scheme by than two in three of the minority ethnic professionals before they can go on a families said they did not have a break waiting list, and there is evidence that from looking after their child as often as some do not even get that far. they needed. Yet, as in Chamba et al’s study, three quarters of the parents did In Chamba et al’s study, no more than not use short-term care. A third of the one in four parents was using any kind of non-users did not know the service short-term care. Less than one in five existed and the others had ‘chosen’ not to Bangladeshi families said they used a use it. There were no details on the short-term care service. Only 10% of reasons for ‘non-using’. However, of Hatton’s sample of 136 parents reported those who did use short breaks, two- receiving ‘respite care’, and this was thirds felt they needed more. Although data from the minority ethnic families was

13 Short breaks

not analysed in detail, or by specific were dissatisfied with the amount of care ethnic group, there were clearly barriers that was available. In Hatton’s study, to access for all families. These need to parents who used short breaks also felt be researched in more detail (Beresford, that the amount they received was not 1995; Chamba et al, 1999). sufficient, much as they valued the service (Hatton et al, 2001). This is unsurprising, A study published in 1990 found that given that short breaks are clearly a Leeds social services’ family placement strained service faced with much unmet scheme catered for 168 children, plus 90 need. children receiving short-term care in two residential homes. But, despite the ethnic make-up of the local population, only 10 Overnight stays versus home-based children from Black and minority ethnic family link services communities were being supported (Baxter et al, 1990). The Leeds family Evidence from the survey carried out by placement scheme was one of the Shared Care Network for this project projects visited as part of this review, and showed a marked preference for home- the short break scheme made changes to based and sitting services rather than the service in 1996 that were moving overnight stays. This was explicitly toward an increased uptake by Black mentioned by a number of schemes. families. Two recent studies found low take-up of A study by Jaswant Singh, carried out in overnight short breaks by South Asian Cardiff around the same time, describes children and young people, one by the process used by one Barnardo’s short Pakistani young people in general (Rabiee break project that had only one Black et al, 2001) and the other particularly by service user and wanted to increase Indian and Pakistani girls (Steele and access to others – of whom there were at Sergison, 2001). In contrast, these young least 22 children and young people people were making good use of after- eligible. It is a good example of school daytime services and home care proactive work aimed at identifying and support. It is not clear whether, in the alleviating unmet need (Singh, 1992). past, overnight or institutional provision was the only type of short break on offer The Office for Population Censuses and to parents who may have lacked the Surveys study found under-representation information needed to request alternative of disabled children from minority ethnic services. We also do not have groups as users of ‘respite’ care. This information on how the local employment survey noted that no child from an Asian situation, housing need or density of the family had received a short break in the population might affect the ability of previous year, and that only 18% of Asian schemes to provide different types of parents had heard of ‘respite’ care short break care. However, if in some (Gordon et al, 2000). Barriers to access areas of the UK parents and young will be discussed in detail in the next people now have more information and chapter. choice, they may prefer to use day services. (It is worth noting that the study Although most parents who used a short by Rabiee et al (2001) interviewed the break service were satisfied with it, two young people, not their parents, unlike out of five in Chamba et al’s large survey virtually all other studies.)

14 What we do and do not know from existing research

Evidence from two short break projects Children with complex medical visited as part of this research confirmed needs the popularity of sitting and other daytime services with Black families (see Chapter 4 on increasing choice and flexibility of Short breaks have traditionally catered for services). disabled children and young people with learning difficulties rather than those with other impairments. A survey from the Those ‘in the know’ are more likely to get Norah Fry Research Centre found that services although this was still the case in 1999, schemes are becoming more inclusive of Some studies point to services being all disabled children, including those with disproportionately used by families with complex healthcare needs (Prewett, higher incomes, and by those who have 1999a). Most local studies do not analyse the resources to put pressure on service data by ethnicity, type of service and providers. This is likely to put some Black impairment, possibly because numbers families at a disadvantage, as they are are often small. more likely than White families to be on a low income (Mir et al, 2001). Black Noyes’ study of a group of 18 young families are also less likely to have people who used assisted ventilation ‘culturally collective power’; that is, White included young people who came from families are more likely to know how to six different ethnic/cultural backgrounds, negotiate and engage with the systems including three young people for whom surrounding public services or know English was not their first language someone who can offer a ‘way in’ to (Noyes, 1999, p 12). These young people them. South Asian parents have been and their parents said that, even though found to be disadvantaged in this way. taking a break was very important for Almost half of the South Asian parents in them, frequently ‘respite care’ had not a study by Hatton and colleagues did not been considered or the provision was know about ‘respite care’: totally inadequate. For the parents, the lack of this service was a source of These carers [here: parents] were significant stress. The young people said found to have a reduced possibility they did not want to go to hospital or of ‘chance encounters’ with hospices when their parents had a break, professionals and other carers, as they did not consider themselves ill. which for White carers had been the first step in getting help from A current study by the Norah Fry statutory and voluntary agencies. Research Centre is looking at the (Hatton et al, 1998, quoted in Mir experiences of using services of a diverse et al, 2001, p 39) group of children and young people with complex health needs, including those When looking at patterns of use, then, it from Black families. Figures from is necessary to examine separately each Bradford social services indicated that in kind of short break service and the 1996, 37% of children on their database locality and population, as well as for complex health and serious illness examining use by each minority ethnic were of Asian origin, which meant they group. were over-represented (Green, 2001). More analysis of this kind of data that

15 Short breaks

exists in NHS and social services statistics in Huddersfield interviewed 18 children is necessary to help with understanding and young people from minority ethnic relationships between impairment, illness groups who had learning difficulties, and ethnicity. though not specifically about short breaks. They noted that ethnicity and religion were more important to these What Black disabled children and children than to White children, and stressed that this should be taken into young people think of short account in services. break services As part of this JRF project, interviews A recent review of literature, undertaken were carried out in Scotland with nine by Ali and colleagues, noted that “the Black disabled children and young people voices of Black and Asian children in aged between six and 25 years. There disability research have been almost were six males and three females, seven silent” (Ali et al, 2001, p 949). Although of whom were defined by their parents as some of the studies had included minority Pakistani and two as Chinese. Three ethnic children and young people, their were using short break services, two with contributions have not been referred to a family and one in a residential unit. specifically, so remain invisible. The young people commented on how difficult it was to maintain contact with Three studies are exceptions to this. One friends outside school times. They is Noyes’ (1999) study of children and wanted to have access to the young people using assisted ventilation. opportunities their non-disabled peers The second looks at young people and had, and knew that there were barriers to independent living (Bignall and Butt, this. Culture and faith were important to 2000), and the third at young people them, but these aspects did not seem to leaving care (Rabiee et al, 2001). It is be supported in their schools. Moreover significant that two of these studies were they were also denied, to some extent, carried out by Black researchers. But within their children’s own communities. there are changes in hand. Recently, a number of initiatives have put disabled There is evidence of change, however. children and young people’s views centre Two projects currently in progress at the stage, though the focus is general, or on Norah Fry Research Centre in Bristol have access to leisure, or inclusion in schools. included interviews with Black disabled These include Black disabled children young people (Heslop, work in progress), and young people, though there are still and the Audit Commission study is also virtually no studies that have focused currently seeking their views (Davies, specifically on their views about services 2001). (JRF Findings 2001a, 2001b; Murray, 2002: forthcoming).

There is evidence that local authority practice in consulting in general is at an early stage, so Black children and young people are even less likely to have been consulted without specific effort (DoH, 2001b, p 61). Steele and Sergison’s study

16 3 Barriers to accessing short breaks

If Black families with disabled children ‘family support’ and ‘disabled children’s are not using services, it is no longer services’ running on parallel tracks. A acceptable to see it as their responsibility: study of family centre use by Black it is not down to them to find out what is families noted the administrative available and to make their own separation of family support and services arrangements to use services. It is now for disabled children (Butt and Box, recognised that institutional barriers exist, 1998). Ethnicity in services has frequently and that racism as a barrier runs through not featured at all, or has suffered from all services unless clear steps are taken to the separation described earlier. In arrest it. The main barriers are addition, services may not work together summarised below. effectively. For example, poverty affects families with disabled children more than those with non-disabled children, but is Separation of disability and more likely to affect Black families. Both groups also have greater housing needs. ethnicity; a lack of service The Chamba et al (1999) survey found coordination that six out of 10 families reported their home to be unsuitable for the care of One of the young men interviewed in the their child. Pakistani and Bangladeshi Scottish study (Patel, 2002) commented families reported the most housing that “Disability organisations do not problems. Poor housing raises the level understand issues of culture and religion of stress in a family and affects the quality whilst ethnic minority organisations do of life and care for children in many not understand issues of disability”. This ways. A recent report on the involvement has been a central theme in regard to of Black disabled adults in Warwickshire multiple oppressions. It reflects who has details the effects of this exclusion and institutional power, and who may be the separation of disability and ethnicity threatening it (Vernon, 1996; Diniz, 1999; within voluntary and statutory Banton and Hirsch, 2000). The creation organisations (Banton and Hirsch, 2000). by those who have power of services that suit themselves has a long history, and the reluctance to address diversity in services at the outset has resulted in services such as ‘family placement’,

17 Short breaks

Poor leadership, policies, services are dependent on them for planning, consultation resources needed to encompass diversity in services. This situation is likely to continue unless active policy decisions Though there were few studies in the are made to bring such marginal and short break literature that focused short-term initiatives into the mainstream. specifically on the management of culturally competent and ethnically Lack of specific racial and disability inclusive services, it was possible to equality policies and procedures for extract aspects of service development planning and service delivery, lack of and delivery that could act as barriers to leadership and management responsibility access. for carrying them out, and lack of monitoring, can all be barriers. Services It was common for work with minority that do not know the ethnic make-up of ethnic groups to be seen in the literature their local population, and do not include and in practice as an ‘add-on’ rather than them in their consultation process, will as an integral part of mainstream service not gain the confidence of groups that are planning and provision. Integrated already marginalised. If there is an services were likely to be better resourced unwillingness to engage with how racism and given higher priority than separate operates in services, and to debate this services and, ideally, they should be able openly and challenge deep-rooted to meet all users’ needs. However, as assumptions about Black families, services they did not, specialist services were cannot move forward. necessary as well, but these were generally under-resourced and insecure The role of training is important here. (Ahmad et al, 1998; Mir et al, 2001). Beth Prewett’s study identifies a need for training in equalities and anti-oppressive Funding placed many constraints practice for short break panel members. on services in both statutory and Some years before that, other researchers voluntary sectors. Few initiatives from the Norah Fry Centre, having found had mainstream budgets; most evidence of a lack of awareness, were were supported through short-term also recommending staff training in funding. Initiatives therefore had cultural sensitivity (Robinson et al, 1993; uncertain futures. Initiatives in the Prewett, 1999a). Such training still does voluntary sector were especially not appear to be routine, however. A vulnerable to funding crises. Tight recent report on minority ethnic children remits often hampered flexibility and young people with learning and thus the ability to respond to difficulties in the Huddersfield area user wishes. (Mir et al, 2001) included interviews with 49 health, education and social services staff. A An insecure service is less likely to give high proportion had no training in positive messages to service users. Lone cultural competence, and the majority felt Black workers on short-term contracts can they would like to have more (Steele and shoulder a disproportionate share of the Sergison, 2001). responsibility for making services inclusive. Many central government Jenny Morris, in her study of the initiatives such as Quality Protects and implementation of the 1989 Children Act Health Action Zones are short term, and as it related to disabled children in three

18 Barriers to accessing short breaks

local authorities, found a lack of social based services, provision of the full range work support for families who used of services is not universal, and what ‘respite care’ and who should be covered parents are offered can depend on where under the children’s legislation (Morris, they live (Prewett, 1999a). 1998b, p 69). This is likely to be more prominent for Black families who under- use services, leading to an even greater Information about services and level of unmet need. perception/understanding of them Inflexibility of some short break A consistent theme across all the literature services and maintained over time is that Black families, and in particular those for whom Some studies have found short break English is not their first language, do not provision to be insufficiently flexible for know about services and entitlements some Black parents. There are examples (Chamba et al, 1999; Hatton et al, 2001). where the definition of ‘respite care’ did They also may have low expectations of not include breaks while parents visited access to services and reservations about their country of origin to attend a funeral, using them, even when offered, although religious or cultural events (Baxter et al, in Hatton et al’s study, once parents had 1990, p 40). been told about short breaks, almost half of them wanted to use the service. Another study found that because of the inflexibility of services, only a third of An institutionally racist approach to South Asian families with a child with service delivery would locate the learning difficulties used short breaks. responsibility for finding out about and For example, they were only available in accessing services with families blocks of one or two weeks, which ruled themselves, arguing that the service is out visits abroad, and did not allow for available to all, regardless of ethnicity, ‘occasional’ nights – to attend weddings language and religion. An inclusive or other family events, for example service that understands how institutional (Hatton et al, 1997, cited in Mir et al, racism works to keep families out of 2001, p 34). services would see their role in a proactive way and would work to dispel The six South Asian families interviewed myths, find out what the barriers to access as part of Rosemary Tozer’s study felt are, and remove them. There are that: “the provision on offer was culturally examples of South Asian mothers inappropriate, that the language and believing that their disabled child would customs of the children would not be be removed from the family permanently understood. Parents would have if they agreed to receive help from social preferred day care and support at home services (Poonia and Ward, 1990; Shah, from someone who could play with the 1992) and of parental concerns about children for a few hours, rather than potential child abuse (Hatton et al, 2001). overnight respite” (Tozer, 1999, p 41). Studies show a reluctance to ask for help due to the stigma associated with ‘charity’ While short break provision has definitely in accepting welfare, and with become more flexible and includes home- acknowledging their child as disabled

19 Short breaks

(Singh, 1992; Butt et al, 2000; Jones et al, perceptions of services: fear that the 2002). child’s religious and cultural needs would not be met, not knowing about the The language and terminology of short service, seeing accepting the service as break care needs to be examined as charity when they had nothing to give parents may not understand the terms or back, and feeling that asking for help was may misinterpret them. This message somehow shirking responsibility. There applies equally to the language used to was also shame at being thought not to describe other forms of provision such as be coping. ‘direct payments’ to which parent/carers of disabled children may be entitled (Butt et al, 2000). Perceptions about disability

There are overlaps here with processes that exclude families, both Black and In a study carried out in Wales, Jaswant White, who live in poverty. The effects of Singh (1992) interviewed all known disadvantage, a lack of information and parents of a child or young person with difficulties with communication can lower learning difficulties in one particular expectations of support from statutory locality. He found that parents did not services. This may explain the under- know how to ask for help, that some saw representation of Bangladeshi families in their child in a stigmatising way and services. Chamba et al’s (1999) survey of therefore did not want to draw attention some 600 families found that fewer than to themselves, and they equated asking half the Bangladeshi parents could speak for help with accepting ‘charity’, which English, and that this was consistent with was perceived negatively. Singh their greater need for an interpreter when recommended that family-link schemes talking to professionals. More than a should take time and effort to break third of parents felt they had less than a down these barriers to access, dispel the full understanding of spoken English, myths, and engage parents in support for with only 25% of Bangladeshi parents their children and themselves. Although saying they understood spoken English discriminatory attitudes toward disability completely (see also Chamba and Ahmad, are widespread across all ethnic groups, 2000). racism can mean that workers collude with Black families’ attitudes, explaining Chamba et al found that, although the this as ‘being in their culture’ instead of provision of interpreters was only challenging them. reported by six out of 10 families that needed them, the majority of Bangladeshi families (who expressed the most need Lack of an ethnically diverse for this service) were usually provided with one. Across all ethnic groups, workforce parents were least at ease with writing English compared with speaking or Every study looking at access to services reading it. by Black and minority ethnic families mentions the importance of providers One of the parents interviewed for this having a workforce that reflects the report echoed many of the views in the communities they are trying to serve. literature about parents’ awareness and This applies to social and health workers

20 Barriers to accessing short breaks

as well as to short break carers. Many of found that 25% of children’s schemes those interviewed in studies where this identified a need to recruit short break was not the case, were aware of the carers from South Asian communities, and barrier this created but had not always 10% needed more carers of African found ways of changing the status quo. origins. Schemes felt that lack of staff and Parents drew attention to this fact when resources prevented them from giving this discussing take-up of services. Where enough priority (Prewett, 1999a). English was not the first language of hard- to-reach communities, monolingual In the field of children’s social services, workers could not do their job properly. there is now more emphasis placed on Communities lacked role models to keeping children linked to their kin and demonstrate that the services would cater communities and, for looked-after for them. Parents worried that their child children, the recruitment and support of would not have her or his cultural needs kin as foster carers (DoH, 1991, 2001c). It met by someone from another ethnic is surprising then, that Prewett’s study group. This last finding was consistent found that only 3.5% of children’s support across the many studies referenced. carers were relations. She also found some schemes who said they were ‘not ‘Ethnically diverse’ does not mean a allowed’ to use relatives. However, one service having a single Black worker who study notes delay in linking children that then takes all the responsibility for work was attributed to a shortage of Asian with Black and minority ethnic carers, but gives an example of close communities. This can lead to burn-out, relatives willing to be carers but the alienation and marginalisation. agency refusing to approve them, as it was not their policy (Stalker and Robinson, 1991b). The authors note that, Lack of diversity in short break in contrast, the recruitment of kin as carers had met with success in other carers, sitters and other service places – for example, in Bradford. providers

Several studies pointed to a severe Myths about kin and community shortage of short break carers for disabled children and their families from minority support ethnic groups. The shortage of Black short break carers and sitters was The following messages may seem to frequently raised by providers as a reason contradict those in the previous section. for low take-up of services. Others had If kin support can be a myth, how can noted no mention of minority ethnic recruiting kin as carers be possible? But carers; for example, in local authorities the two can coexist. It is important here visited by the Social Services Inspectorate to acknowledge differences between in England and Wales (DHSS/SSI, 1987). ethnic groups, geographical location of communities and patterns of employment, Beth Prewett’s national survey found that for example. Each local area will have there were less short break carers from different potential for kin relationships. minority ethnic groups than children and young people who needed them, and that The belief is commonly expressed by this need had not been reducing. She service providers that Black families (in

21 Short breaks

particular, those from South Asian Chamba et al’s findings were reported communities) are under-represented in (Hatton et al, 2001). services because they ‘look after their own’ and get support from the extended The six Pakistani families interviewed by family. This has been continually Robina Shah in Tozer’s study (Tozer, challenged by research evidence. Singh 1999) also reported less support from the (1992) describes this as a myth, and wider family than White families, and a suggests that it is the characteristics of the lack of contact with other parents of services, not the families, that are disabled children in that they were “least responsible for low take-up. Beresford likely to be in touch with other parents found that Black parents were except within the family” (Tozer, 1999, p significantly less likely to be receiving 24). support from extended family members than White parents. She argues that this In Shah’s (1992) study, low take-up of “contradicts the belief that minority ethnic short breaks was often interpreted by families tend to be well supported by providers as the service not being needed their extended family” (1995, p 22). rather than a lack of understanding or Black parents were also less likely than knowledge of it (1992, p 48). White parents to belong to a support group, and a third of parents from these In a study focusing on minority ethnic minority ethnic groups did not know children with learning disabilities, carried what a support group was. This is not out for Huddersfield NHS Trust some 10 surprising if support groups have years later, Steele and Sergison (2001) predominantly White members, and if interviewed 38 parents/carers and 22 Black families do not find them children, as well as a large number of welcoming places. staff. They still found a general perception among staff that South Asians Chamba et al’s (1999) survey of some 600 had extended family support, Black families also found parents commenting, “Whether this is true in receiving less emotional and practical general of ‘Asian populations’ it is not support from their partners/spouses than true of the families involved in our study. the mainly White parents in Beresford’s Carers and children had little such study. Black African Caribbean and support and lacked confidence with Indian groups received less support from external agencies”(p 8). the extended family than other groups. The main reason is that family members Lack of support in South Asian families, lived too far away. Parents, particularly and the research evidence for this is Pakistani parents, were less likely to summarised in the publication by Mir and belong to, or know about, support groups colleagues, Learning difficulties and than parents in Beresford’s survey. ethnicity (2001), emphasising that assumptions about families having kin Over two thirds of the 136 South Asian and community support should not be parents in the study by Hatton and given as a reason for low take-up of short colleagues reported no help from breaks. extended family networks – a greater proportion than in Chamba et al’s study. However, higher levels of support from within the immediate family compared to

22 Barriers to accessing short breaks

Inadequate assessment of need Appropriateness of services and restrictive referral practices Racism Mir and colleagues (2001) suggest that the circumstances of carers (taken here to As early as 1990, the study by Baxter and mean parents) are not adequately colleagues identified the concerns of investigated in the assessment of need. parents about the appropriateness of Interpretations of what people are saying, placements. Religion, language, racism and a tendency for White workers to take and culture were all found to be information at ‘face value’, can compound significant barriers that needed to be their disadvantage. addressed (Baxter et al, 1990). Parents have also reported experiencing racism The ability of short break service directly in services and in everyday life. personnel to assess need effectively In Rosemary Tozer’s (1999) study of depends on a number of factors. The parents with more than one disabled criteria used need to be free of cultural child, all families reported hostility bias, and those undertaking assessments towards them, but the Pakistani families need to be aware of how the assessment specifically reported experiences of process can unintentionally as well as racism. Atkin and Ahmad (2000), in their intentionally discriminate against Black work on parents’ views of service support families. Those carrying out assessments for sickle-cell or thalassaemia, noted that have to be sure they are asking the right racism was reported by a number of questions, that the answers are being parents, particularly those of African interpreted correctly within the realms of Caribbean origin. Parents felt that sickle- someone’s experience, and that the family cell disease was seen as a ‘Black problem’ is in a position to make an informed and therefore it received little attention. decision about what is available for them.

The majority of short break projects Ethnic matching contacted, and those described in the literature, did not accept direct referrals With studies showing an under- from families and communities. Even representation of Black short break carers, voluntary organisations felt they were tied there is less likelihood of ethnic matching to accepting referrals from social services – that is, the provision of ‘same race’ personnel through service-level placements. Beckford and Robinson in agreements. Yet the stigma attached to 1993 found 267 children (46% of Black asking for social services help can be a children) to be in trans-racial placements, barrier. In addition, if projects and social and the proportion of Black carers has workers are not linked into minority not risen significantly since then. ethnic communities or if they feel Prewett’s study shows a high percentage uncomfortable in their presence, they are of schemes reporting ‘same race’ unlikely to engage with families long placements, which she explains as Black enough to make a referral. South Asian carers frequently being linked with more parents’ lack of access to referral systems than one disabled child (Prewett, 1999a). is also likely to be linked to the ability of This has implications for the support and service personnel to assess them workload of Black carers. appropriately.

23 Short breaks

Choice for children and families is be met and where their differing needs important here. Schemes should be are not seen as a problem” (p 40). trying to recruit a wide range of carers, sitters, and so on, so they can match by Robina Shah’s (1992) interview study of ethnicity, language and religion where 35 Asian families found a lack of possible. However, children and young reassurance that families would be able to people are living with their families who have carers who shared the language, can also provide for their identity needs. religion and culture of their child, So in discussion it may sometimes be although they overwhelmingly desired possible for parents to accept White this. Shah also found services unable to carers if they can make an informed guarantee other needs – for example, that choice. A mother in Vijay Patel’s (2002) only women would carry out personal Scottish study had got to know a White care for girls. She also noted difficulties carer who had been a sitter for her in the provision of appropriate food, and children. This carer was trusted, respect for other religious and cultural respected the family’s religious and needs. cultural beliefs and the children were therefore able to stay overnight with her. Steele and Sergison’s (2001) research in Similarly, Black families may have White Huddersfield noted that social services’ neighbours or kin who know the children support with ‘residential breaks for well and would be suitable as carers. children’ seemed to have been designed While the possibility of non-ethnically with the White majority in mind. The matched placements exists, it should not survey suggested that this did not always be used by services as a reason for not fit with some minority ethnic cultures and diversifying the pool of carers. that services should reconsider how to meet minority groups’ needs (p 43).

Culture The Pakistani families in Rosemary Tozer’s (1999) study also felt that the A number of studies draw attention to the provision on offer was culturally reluctance of families to take up services inappropriate, that the language and on offer due to their anxieties that, in customs of the children would not be doing so, the child would experience a understood, and that day care and loss of culture or religion. Both a study support at home from someone who of Asian families with preschool deaf could play with the children for a few children, and another of deafness and hours, were preferred, rather than ethnicity, mentioned parents’ anxieties overnight ‘respite’. about the appropriateness of services (Ahmad et al, 1998; Chamba et al, 1998). It is not clear from the research whether This was also a reason given by 59% of these were the experiences of the Black Hatton’s South Asian parents (Hatton et young people as well as their parents, but al, 2001). as an example of a different type of cultural inappropriateness, some young In Double discrimination Baxter and people using assisted ventilation in one colleagues (1990) reported that: “Many study had inappropriate short break families would prefer to see their relatives experiences (Noyes, 1999). They did not placed in situations where their individual want to go to hospital or hospices when cultural, religious and physical needs will their parents had a break, as they did not

24 Barriers to accessing short breaks

consider themselves ill, but this is all that have to stay away overnight (Mir et al, they had been offered. Jenny Morris’s 2001). study of three local authorities also found hospices being used as a ‘respite’ facility In drawing conclusions from this for disabled children who were not evidence, it is important not to fix on terminally ill, and who may not have narrow definitions of what ‘culture’ is, as been ill at all. Very young children were it varies from family to family and over staying in this provision. This was not time. The overarching message is that necessarily good practice (Morris, 1999). people should be asked what they want and what kind of support they would A recent study of four children’s hospices consider appropriate. found that three were not addressing issues of culture or ‘race’, and were likely to be off-putting to non-Christians; for example, by having crucifixes on the walls and being located in monastery grounds (Robinson and Jackson, 2000, and personal communication with Carol Robinson, 2001).

The report of the Social Services Inspectorate on services to minority ethnic children and families mentioned the importance of cultural identity, parents’ fear of ‘losing’ a child to residential care, and the different cultural environments they would experience in education and training settings (DoH/SSI, 2000).

Another issue that is mentioned in research literature is that of definitions of ‘independence’ for young people. One study found that independence in a Western model was associated with individuality and living separately from family and other kin. This was not shared by some of the Black young disabled people (Bignall and Butt, 2000). Others also note that people with learning difficulties from South Asian and African Caribbean communities felt that independence could be achieved within a family setting, which favoured collectivity rather than individuality. This could account for some families’ reluctance to use short break services where children

25 Short breaks 4 What works?

An important objective in this study is to Although ‘size’ of Black populations need find out what works: to identify the not be the reason for good practice (or messages coming from successful lack of it) as Richards and Ince found schemes and good practice. (2000), there is a need to collect and disseminate good practice from areas with The evidence for this section comes from small Black populations. Some schemes a number of sources. Thirteen family- may be undervaluing what they are based short break schemes replied to a doing. questionnaire sent out via Shared Care Network, the national coordinating Practice and research literature also offers organisation for short break care. The a number of messages and these questionnaire asked for examples of good references are highlighted in bold in the practice, and what was working for them Bibliography. in relation to Black and minority ethnic families and short break carers. The 13 Messages are summarised as follows. schemes included some with quite small Black populations. However, these schemes provided few ideas on what Acknowledge barriers to access works, unlike those with larger Black populations. Six of these schemes were for families then visited, in order to collect more detailed information. Three were One of the first stages in the process of Barnardo’s schemes and three were run solving problems is acknowledging that by local authorities. The majority had they exist. Some short break schemes been established for more than 10 years. had been operating in areas with high The six schemes were in Bradford, minority ethnic populations for a number Dudley, Leeds, London Newham, London of years before they had identified and Tower Hamlets and Liverpool. Interviews tackled under-representation. For them, were carried out in Nottingham and an initial review of how the scheme was London with three Black short break operating was necessary to identify where carers and two Black parents, and two the service needed to improve. The next Black short break carers in Dudley were step was often to employ a Black also interviewed. development worker, who would provide a ‘way in’ to local communities. From

26 What works?

this, other initiatives would follow – for Plan clearly, prioritise policies and example, improving communication, offer management guidance providing information or undertaking more appropriate assessments. Building in diversity from the outset can “After three years it was clear that avoid provision for Black families being the scheme was not being ‘added on’ as an afterthought. This can sufficiently used by the Asian ensure that the services reflect their Community … we decided our first needs. Policies and procedures are priority … would be to see if the needed to affirm an organisation’s structure and presentation of the commitment to diversity and access, and scheme could be made more strong leadership helps with management appropriate…. We first looked at and implementation. the Asian families we had on the scheme already. It appeared that The opportunity to set up a new scheme, the families were difficult to match or to rework and expand an existing one, with our current ‘carer families’ for means that planning for diversity can be three main reasons – language, built in from the beginning. transport and lack of phones. These factors were present with The success of enabling Black and white families of course, but minority ethnic families access is seemed magnified with the Asian that this was thought of at the families. The answer to language outset and not as an add-on. The was obviously to recruit more project leader knew that the Asian families as carers, and the service had to be representative at answer to the second was to find the outset of meeting diverse families in the locality of those community needs, resulting in less needing the service. These initial strenuous work later on. thoughts led us to the more (Newham) fundamental problem of our own language and knowledge base. If Barnardo’s Families Together we were to recruit people as Project in Tower Hamlets was set helpers in on the schemes and if up in 1987 as a pilot scheme. The we wanted to understand what staffing at the time was a project Asian families might want from a leader, an administrator and a part- respite care scheme we needed to time Bangladeshi man. It was know how to communicate, where recognised by the staff that to communicate and with whom to Bangladeshi carers and families communicate. Our next steps need to be approached through were therefore to talk to Asian the men, hence the Bengali- people, both parents and speaking male worker. (Tower professionals, about the scheme Hamlets) and to try and find funds for an Asian social worker. The latter The schemes that seem to have the point was the catalyst to our later clearest practices in relation to access by improvement.” (Bradford) Black families also have specific policy statements about service provision that include clear statements about non-

27 Short breaks

discrimination, inclusion and access. All clearly recorded on all Project schemes that replied to the questionnaire documents. were able to refer to the corporate equal opportunities policies of their parent • Staff to give consideration to organisation or social services service users’ language needs department. However, not all could and to discuss with Project produce these, or actively link them to managers about use of the service they provided. Children and interpreters and translation. family services do not always have their own policy, let alone one on racial • Staff to make themselves familiar equality in services. One scheme worker with the complaints procedures commented: “It has taken a while to and the languages this is assemble the info and docs or find out available in. they don’t exist … it’s been an interesting exercise”. • When vacancies occur, consideration will be given to These are examples of the kind of filling this vacancy with a messages that Barnardo’s Hamara, member of staff from a specific Spectrum and Family Link projects have cultural background of current in their policies: and potential service users.

The Project will endeavour to link • The Project in its entirety (décor, children and young people with publicity, food, and so on) will carers/sitters/volunteers from their strive to represent the cultural own racial, linguistic, religious and background of current and cultural group as we believe that a potential service users. child’s inheritance is an essential (Spectrum) part of their identity – an important part of what makes them the way Spectrum has a set of Race Equality they are, and one of the strengths Standards that, for each standard, outlines which will help them grow up how it will be achieved. The example confidently. If this is not possible, above is from Standard 1. the child will only be placed within a family that has a clear Within Family Link we take our understanding of the issues of race Equal Opportunities Policy and and culture. Should this happen, Basis and Values statement very the Project will continue to search seriously. This means that our for a carer reflecting the child’s staff, carers, sitters and volunteers background. (Hamara) will always reflect the racial, cultural and religious diversity of The Project actively works to Newham and will be welcomed increase accessibility and and respected for the skills and appropriateness of service for commitment they bring to the potential and current black service project, regardless of their users. This will be achieved by: disability, gender, sexuality, marital status and class. In the same way, • Staff ensuring that all service we are committed to equality of users’ cultural background is access to our service for the

28 What works?

children, young people and religious denomination of a child’s families who are referred.… Staff, family will be taken into account carers, sitters and volunteers will wherever possible when matching therefore work in partnership with a child/family to a carer. the children, young people and their families who receive our This kind of statement is a start toward services to achieve this aim. inclusion. (Family Link) In Liverpool, a Black Development Sense, the national voluntary organisation Working Group has been set up and has for deafblind people, though not a short planned a series of meetings with break scheme as such, runs residential community groups in the area. These holiday provision. Its representatives meetings have confirmed that there is a replied to the questionnaire and the lack of knowledge about the work of organisation’s policy states: Barnardo’s as an organisation and also about what fostering (where the short … We recognise that membership break scheme is located) involves. of the race and culture into which Having now made a number of important a person was born is their right, community links, the project is now able regardless of disability. Sense to work to rectify this. clients from minority communities will, therefore, have particular In Leeds, since 1996, the family placement needs in the areas of race and team of the social services department as culture which we must seek to a whole (covering services to disabled meet. (Equal access and equal children and adults) has been working to opportunities in Sense: A statement an action plan for minority ethnic of intent) development work. The children’s sitting and short break services are components Other schemes have yet to reach Black of these. In addition, Leeds has recruited families with their service. The Short a working group to advise and assist, Break Care scheme run by North drawing on the skills of Black staff in Tyneside Children’s Services, for example, other parts of the City Council. This serves a population with a percentage group is still in operation and sets yearly from minority ethnic groups of 1.1%. targets for the service. However, its service handbook has an equal opportunities and anti- In Bolton and Tameside, multidisciplinary discrimination statement, and it also states workshops were held to look at issues of that: access to services by Black families (who were generically defined as carers). A child’s religious background Though not specifically about children’s must be considered. The services, all the recommendations and information will be recorded and points in the two summary reports are they will be given the opportunity relevant and echo findings from this study to attend religious services where (Hepworth, 2000a, 2000b). requested. Children/young people will attend services of a different faith where permission from child and parent has been sought. The

29 Short breaks

Adequately resource short break Know your locality: use outreach provision and community development

Messages from the literature emphasise The barriers to accessing services the short-term nature of funding for mentioned in Chapter 3 can have the ‘minority ethnic’ type initiatives. We did effect of rendering minority ethnic not ask about the resourcing of schemes families invisible to the majority who in the survey, but a number of them are provide the services. Even White workers funded as an integral part of service who live locally may not know where to provision – including minority ethnic ‘find’ African Caribbean and South Asian workers – and so have some security and families. In these situations, community stability. Schemes in Bradford, Leeds and work skills have been found to be useful. many of the Barnardo’s projects, are not Places of worship, community projects, one-offs but have long-term cinemas showing Asian films, and other organisational commitment. Although this cultural and social events, are useful kind of service can never have enough starting points. funds, the Barnardo’s schemes seem particularly well resourced. But this is “She [the Asian social worker] was due to fundraising efforts. Family Link in able to use her contacts in the Newham has benefited from being one of community to help give the the year 2000 appeal charities of the Lord scheme respectability. She was Mayor of London, enabling it to move to able to suggest new avenues to a new building in 2001. Different aspects present publicity, ie corner shops, of project work draw on funds from particular clinics used by Asians.” different sources – for example, from the (Bradford) Carers Special Grant, Children’s Promise and the Children’s Fund. So funding is “Word of mouth has been never assumed and is always being successful as has been the raising sought. of the scheme’s and Barnardo’s profile within the community by Organisations with limited funds may be the Black development worker.” tempted to look for low-cost forms of (Liverpool) provision. They may decide to expand their sitting services, for example. If so, “Tapping into existing groups and they may find that this is not a cheaper networks such as women’s option as sitters can be paid more per language classes has been quite hour than approved carers. Nevertheless, useful.” (Bradford) such costs can be balanced against the attraction of providing a service that is “There was a lengthy consultation valued by neglected groups and thereby period where a number of people meeting the needs of more families from were approached. The male heads minority ethnic groups. of households [sic] of families known to have disabled children were approached. The workers went to visit families, health centres, schools, GPs and community groups. A parent carer

30 What works?

was involved in this process to Record and monitor ethnicity encourage parents to come forward and use the service.” (Tower Hamlets) The importance of accurate record keeping on ethnicity is stressed in the One of the carers interviewed directly for literature, and also by schemes aiming for this study affirmed the importance of good practice. It is only by regularly outreach, and even of social workers collecting the statistics, and then using going from door to door, informing them to implement and change services, people about the service. She felt a social that progress on inclusion can be made. worker from the same ethnic group Schemes that analyse their information on would be better able to encourage families by ethnicity are much clearer potential users. about the need to develop services. As populations change, services need to Outreach, of course, is a continuous change to suit. Even where schemes are process. Needs and communities change, successfully including families from and a competent service will always be diverse communities, they still need to looking to match its services to local recognise and investigate the possibility need. In particular, when working with that there are others not being reached. marginalised and excluded groups, Barnardo’s Family Link project in outreach is essential. Schemes that build Newham is finding increasing need this into their normal running costs and among different African communities, procedures are more likely to succeed. In including refugees and asylum seekers. Leeds, the Asian development worker As ‘African’ covers such a diverse group regularly visits nurseries and schools, of people, the project is having to think community centres, neighbourhood and work strategically. This involves projects and local groups. Having a stall networking, outreach, and support with at the Mela (festival) in Roundhay Park, language skills, to identify barriers to for example, was described as “a very access, and then changing practices to enjoyable, fun day”. accommodate accordingly.

“[We] need to do ground work The examples below show attempts by a before targeting [recruitment of number of schemes to address unmet carers]. Helping people to have an need: understanding by speaking about the services to groups, community “We need to recruit [carers] from authorities etc before targeting.” Somali and Turkish communities.” (Newham) (Hamara)

“A proactive community “There are a few African children development approach [for but we have not really got short recruiting carers] had been fairly break carers for them, and African successfully tried out by Sharing Caribbean carers are also sought.” Care [the short break scheme in (Newham) Dudley]. This was very staff intensive and a major problem was “A male worker has attracted male the team’s ability to continue this sitters, and we now have eight, all level of involvement.” (Dudley) from Black and minority ethnic

31 Short breaks

groups. The male sitters seem to the stigma – some families feel prefer to talk to a male worker they cannot use outside services. (they are working with male The Project has not given up and teenagers)….” (Newham) is still looking at trying to find the right way to get other ethnic “The majority of the [minority groups to use the service ... they ethnic] users and carers are have gone into other boroughs to Pakistani Muslim with not many find carers from the Turkish from Bangladeshi and African community. They have spoken to Caribbean communities. Eastern parents at schools in an effort to European communities are not recruit minority ethnic carers.” thought to be reached.” (Bradford)

“There is a need for more carers Ensure workforce diversity from the Sikh community. There has not been a representative response from the Bangladeshi All studies and all projects included in this community.” (Leeds) review are in agreement that having Black staff makes a difference to the perception The Leeds project also provided a copy of and uptake of the service among Black a Race Equality Impact Assessment report groups. Barnardo’s North West scheme that they developed in December 2001. recruited a Black development worker In this, it has set targets for improving its two years ago, an active member of the ethnic monitoring – for example, by African Caribbean community. This specifying each of the different ethnic and worker has built links between the nationality groups covered under the community and the scheme. The project category ‘Asian’. leader wrote: “In the mid-1990s we recognised we were an all-white staff Barnardo’s Families Together scheme in group. Barnardo’s had little service Tower Hamlets is aware that it is still not provision within the black and ethnic reaching all the communities the service communities in Liverpool”. needs to reflect, but it is committed to trying: Both the Bradford and Leeds schemes have also changed the nature of their “There is a significant Chinese services by the recruitment of just one community but no Chinese users Black worker. The Bradford scheme now of the Project’s services. The has one more. In Tower Hamlets, the Project staff have tried to project specifically recruited an African encourage Chinese families to use Caribbean social worker “… to enable the services but without success … Black carers [of African origins] to come likewise they have not been able forward. This clearly bears out research to recruit carers from the Chinese findings that projects need Black staff to community…. They have used the recruit and support Black carers and radio and worked with a Turkish families”. community centre in a nearby borough but have had no Schemes in Liverpool and Leeds had success…. This is largely due to tackled the implications of employing a

32 What works?

lone Black worker as a training issue for training in communication skills so they them. In Liverpool, the scheme had can interview disabled children and networked with others in a similar young people, many of whom are from position. Barnardo’s scheme workers Black groups. have access to a regional Black Workers’ Forum for support. Other positive In Tower Hamlets, most of the staff have strategies were an explicit commitment to communication skills, such as in the use joint responsibility for ‘minority ethnic’ of Makaton, and ensure that children and issues, long-term security of employment young people are included. More needs for such workers, and clear peer and to be done in this area, but there are a management support. number of national initiatives and available resources that demonstrate that Gender diversity is also important. policy and practice is changing (Ward, Barnardo’s Family Link in Newham has 1998; JRF, 2001a, 2001b; Triangle, 2001). recently recruited a White male deputy Vijay Patel’s (2002) work for this project is project leader. This seems to have again relevant here. The nine children enabled the recruitment of male sitters, and young people he interviewed were particularly from Black groups. interested in making and maintaining friendships, having assistance so they could play outside and go where other Ask children and young people children go rather than using short break services as such. Thus access to leisure what they want facilities and personal assistance seems crucial. There is quite a gap in practice in respect to asking children and young people what they want. Reviews were Ask other family members what mentioned as providing a chance for children and young people to be they want consulted. Even schemes that do communicate regularly with children and Only three of the 13 schemes in the young people, and observe their well- survey specifically said they assess what being, feel more could be done to involve families require of the service, but these them in shaping services. Family Link in schemes had noted that parents want Newham does work proactively with flexible and culturally appropriate services some children to match needs and and “an extension of services to include services: “Generally with the Asian clubs, and so on”. There is a consensus communities networking seemed to be that parents want more sitting and home- successful; ie asking the children on the based services. This links with the waiting list if they would like someone broadening concept of short breaks noted that they know of to offer care such as a in Chapter 1. cousin and/or an existing carer”. Barnardo’s Family Link in Newham took Disabled children in Newham Borough as the opportunity to consult with families a whole have been part of a significant before moving into its new purpose-built consultation exercise coordinated by premises in 2001. The project staff had Jenny Morris. Local project workers regular consultation meetings and sent a (including Family Link staff) received questionnaire, receiving a response from

33 Short breaks

over a third of the families. They now also employs interpreters and translators hold consultation meetings four times a as well as having bilingual social workers. year and draw on parent involvement in their annual reviews, recognising that this In Bradford, the interpreting unit can is a way of getting feedback for service engage an interpreter through a three-way planning. In Leeds, the short break telephone link, if staff who speak the scheme sent a questionnaire to all parents relevant language are not available. using the service in April 2000-01 and just over 40% replied. Although the replies were not analysed by ethnicity (which Disseminate information would have been extremely helpful), parents were overwhelmingly positive about the service. Lack of available information is recognised as a key explanation of why services are not taken up by those in Communicate effectively need, and why it is difficult to recruit short break carers from under-represented groups. Many schemes feel they already Once families have referred themselves to provide enough information, but often a scheme or to social services as a result this is not wholly appropriate or of effective outreach work, are they able accessible or properly targeted. The to find someone sympathetic and able to information produced needs to be in a communicate with them? For some variety of media – such as video, under-represented groups, an audiotapes, posters and leaflets – as well answerphone message in their first as spread by word of mouth. It needs to language, or being able to speak with be inclusive of the families that schemes someone in their first language, can make are trying to reach. This means paying a service seem really welcoming. attention to images, photos and pictures, Schemes in Leeds and Spectrum in and making sure that the text or other Hanworth, London, have answerphone messages contain positive and welcoming messages, and in London someone will messages, “putting things like ‘all call back and speak in a caller’s first communities are welcome’ on language. Barnet also has different- information” (Newham). language telephone numbers on leaflets. “We have three Asian social workers who This attention to diversity is desirable not between them speak Urdu, Punjabi, ‘just’ because there may be Black families Hindi, Gujarati and Somali” (Barnardo’s needing the service locally, but also Hamara Project, Walthamstow, London). because reflecting diversity is an essential part of good practice. Translating leaflets Similarly service users of Sense can into languages used in the local request information in different community and having answerphone languages, or can use an interpreter by messages and audiotapes for loan in telephone via a language line. different languages were all mentioned. Getting the local press interested in Barnado’s Families Together project in featuring short break care, and using the Tower Hamlets has a bilingual secretary/ publicity mechanisms of community, receptionist who is the first point of religious and other groups have also reference for most users. The scheme worked well.

34 What works?

The Asian development worker in Leeds Stimulate access and demand has regular slots on Radio Ramadan, where she promotes the short break (and other) services. Leeds also has leaflets in Several themes emerge here. One is different community languages. Bradford accepting referrals directly from parents has tried a number of strategies, including or other members of the community. a range of leaflets in different languages, Another is making links with local radio slots and video: minority ethnic groups and involving them in the dissemination of information, “We made a video using Asian identification of need and the planning of families with an Urdu commentary, the service. Third, a diversity of short which could be lent to either break carers and also project staff can be potential carers or users for the obtained by actively networking with whole family to view.” local people.

“Our initial meetings for potential One parent interviewed for this study carers were offered in a choice of intended to apply to her local scheme to English, Punjabi or Bengali. be a carer as she wanted to “give Transport was offered to the something back”. She felt it important people attending the meetings.” that children from minority ethnic groups (Bradford) had carers they could relate to. This parent said that every day she Translations have not always worked recommended the short break service to well, though. In Barnet, the scheme other Black parents. worker commented: “Earlier distribution and mailing of other language leaflets was It has to be acknowledged that there is not at all successful. Translating the rarely going to be enough provision to leaflet did not necessarily translate the meet all needs. However, various aspects concepts. A different approach needs to of the referral process have clearly acted be thought through”. as a barrier for minority ethnic families. Family Link in Newham encourages It is important to have members of the word-of-mouth information so that same language group involved in the families can refer themselves to social translation and proofing – and, better still, services, though not directly to the project in writing appropriate text drawing on itself. If social services are working with commonly shared cultural concepts. schemes in this way to include rather than exclude families, this can result in In Dudley, the questionnaire for families increased access as personal contact with a disabled child is available on the brings with it reassurance that the family council website, so parents can complete will be treated fairly. it there and be included on the register. The question asks them to state their In Barnardo’s Hamara project in ethnicity (in an open box with no Walthamstow, 30% of referrals were from categories suggested) and also to state the parents in 2000-01. In Liverpool, “Word of first language of all those they list on the mouth has been successful, as has been form. the raising of the scheme’s and Barnardo’s profile within the community by the Black development worker. The aim of

35 Short breaks

the scheme is to place Black children in Ensure diversity of short break culturally appropriate care, which carers includes disability” (Telephone conversation with Barnardo’s Liverpool project leader). Parents mostly want carers who reflect their children’s and their own ethnic group. Children need familiarity and role Accept kin as carers models. National and local policies support ethnic matching, but this will not happen unless actively promoted. From the questionnaire responses, it Minority ethnic groups need to feel seems that schemes that are thinking welcomed and to also see others like about inclusion do accept kin as carers, themselves involved in management, sitters and befrienders. Project workers in support and making policy. In this way, Newham, for example, asked children on they feel represented at all levels. their waiting lists to recommend someone Schemes have realised this and many are who could be approached. Nevertheless working hard to develop or maintain there are reservations. Bradford has diversity. The carers and parents made extensive use of kin in the past, but interviewed for this study are keen to has reviewed its practices of using kin have Black staff assessing and supporting such as grandparents, sisters and brothers. carers. Parents reported feeling more Friends and neighbours are routinely comfortable with someone from their welcomed as potential carers, but own ethnic group, and they said they members of the household or immediate would bypass other workers to contact relations are not. In Leeds, too, close their preferred worker if necessary. relatives were in the past approved as foster carers, but not if they were “We targeted national minority members of the same household. Current ethnic papers, eg The Voice. We practice is to provide paid support for also established a diversity forum relatives offering short breaks under to advise us.” (Sense) Section 17 of the 1989 Children Act. “We have reviewed our processes, The reasons for this need to be explored providing follow-up home visits further. It may be necessary to keep an following initial enquiries, to share open mind about what may be in the best details of our work. Panel is now interests of the child, and to obtain the representative of local black and views of children about who they ethnic communities.” (Barnardo’s consider might be most suitable as carers. North West, Liverpool) It will be worth monitoring policy changes such as those associated with Barnardo’s North West also has a specific Direct Payments to see if this allows leaflet on fostering in Black and minority family members or wider kin to be ethnic communities, aimed at recruiting a employed as personal assistants (who are diversity of carers. paid to provide support asked for by a disabled person). In London Pimlico, the overnight short break scheme of Westminster social services advertised nationally in The Voice

36 What works?

newspaper, as well as in the local paper. work together to offer care i.e. an Word of mouth has also been successful. aunt and niece.” (Newham)

The Asian carer who was interviewed in Tower Hamlets’ Families Together scheme Dudley felt that a face-to-face direct staff very much value word of mouth as a approach to potential carers could work way of recruiting more carers. They have well, and that someone doing this who held the equivalent of a Tupperware spoke the language and understood the party, where one carer agrees to host an families’ culture would be welcome. She event and gets all the costs covered. As a advocated a higher public profile of the result, friends and relations have a social scheme at Asian community events and event as well as hearing about short offered to assist. breaks and becoming carers.

Jewish communities in Barnet are the “In the Bangladeshi community the largest minority ethnic group at 16%, main form of recruitment is ‘word followed by Indian people at 7%. In 2000 of mouth’. The project has never and 2001, the short break scheme carried had problems recruiting out recruitment campaigns to increase the Bangladeshi carers.” (Tower number of Black and minority ethnic Hamlets) carers. This involved illustrated adverts, posters and leaflets in community This is helped greatly by having staff who languages. An advertisement in the local are comfortable in diverse social settings, free newspaper generated as many as 150 and who can interpret the responsibilities enquiries. The scheme now feels it needs of the job in a flexible way. Also they are a more diverse staff group to follow this still reaping benefits from an earlier initiative up effectively, offering training recruitment campaign, demonstrating that in a range of languages, and providing concentrated investment can have long- ethnically matched and culturally term payoffs: comfortable support. “A most successful piece of work In order to recruit a wide group of carers, for the Project was their scheme workers in Bradford encouraged recruitment campaign/drive seven existing carers to “bring a friend along” to years ago. They are still getting events. They provided stalls and displays enquiries from posters put up all in suitable places, carried out personal around the community: GP visits to homes, as well as visiting surgeries, libraries, schools, women’s groups. In Newham, there have community centres, etc. It was a been targeted campaigns: targeted recruitment, which highlighted the ethnic background “… a campaign three years ago to of children on the waiting list.” African Caribbean communities; (Tower Hamlets) potential carers who might have appropriate accommodation (for With regard to actually appointing people mobility needs) and sometimes as short break carers, Bradford has found couples – not necessarily partners Asian families uncomfortable with giving or husband and wife teams, but names and addresses of referees. The two people who would like to scheme has adopted the practice of taking verbal information from referees, as there

37 Short breaks

is a mistrust of official paperwork and project has applied for and received extra form filling that is not necessarily to do funding to deal with the unmet need, and with literacy but with intrusion. can now offer sitting services to more families.

Increase choice and flexibility of In common with other schemes, Barnardo’s Hamara project in services Walthamstow reports:

The concept of short breaks has “… a continuing demand from broadened out considerably since the parents … the sitting service has time when schemes offered just overnight expanded from 40 in 1998-99 to stays with a short break carer. This is 120 this year [2001]. We also have very welcome, since evidence from a waiting list. The flexibility of the existing research as well as several of the service – siblings can be cared for, short break schemes that took part in this children can be taken out, invasive study points to the popularity of sitting care can be offered etc – and the services and other day services with Black skills and continuity of the sitters families. seem to be the features of the service valued most by parents.” In Tower Hamlets, the original Barnardo’s (Hamara) Families Together project has now been divided into two separate projects. Flexibility of provision in some schemes Families Together deals with home-based extends itself to after-school and holiday and overnight stays carried out by short play schemes, advocacy/befriending break carers, and Tower Hamlets’ schemes, holiday clubs and leisure Disability Resource Centre deals with groups. These are best run with the aim sitting and accessible leisure provision. of supporting disabled children and young people to take part in activities Leeds also keeps its special-needs sitting with non-disabled young people. and home-based care scheme separate Barnardo’s Hamara project in from its short break scheme. The sitting Walthamstow, for example, has a wide scheme can be directly accessed by range of provision, including those just parents and is often the first point of mentioned, and also analyses users of contact for support to families. It is now each of them by ethnic group. operating to full capacity and needs to expand. It is worth noting that this short Family Link in Newham sends newsletters break project is finding that it is not to and consults with all families on the cheaper to provide sitting services, as the waiting list, as well as those in receipt of hourly rate paid to sitters is higher than services. This demonstrates that they are for short break carers. valued and keeps communication open.

Barnardo’s Newham project introduced We asked schemes about their use of sitting services in 1996, two years after the Direct Payments, schemes whereby older project was launched. This has proved so disabled young people and adults can popular with parents (who seem to feel directly employ someone to provide that this service will be more accessible) personal assistance for them. We found that there is substantial unmet need. The that schemes are aware of this but that

38 What works?

the implications for their services are not using these facilities was not provided). yet clear. This area is worth some It is worth bearing in mind that in areas attention as there is evidence of low take- where Black families are in a numerical up by adults from minority ethnic groups minority, attending all-White support due to many of the barriers Black families groups can be difficult and needs with disabled children face to accessing addressing. services (Butt et al, 2000). Several schemes commented on the lack of sitters for ‘older’ young people, especially young Review and evaluate men, and it could be that Direct Payments will provide a way for them to employ people from their own networks as sitters. Monitoring, reviewing and evaluating the provision of services are now required by Direct Payments can be seen as providing central government. Equalities legislation an alternative to short breaks. The report and guidance is now much more Whatever next? Young disabled people ‘mainstream’ and is finding its way into leaving care says: “The Government have general monitoring processes. Managers suggested that this [Direct Payments to are sharing responsibility for the process, 16- and 17-year-olds] might alleviate the rather than it being a separate activity of need for short break services for some an Equal Opportunities Unit. This trend families” (Rabiee et al, 2001). is reflected in a number of scheme documents that we obtained. Six out of the 13 schemes have evaluated their Facilitate support groups existing services for Black families.

A number of shared care schemes that Barnardo’s Hamara project workers in provide services to Asian families are London reported that they facilitate involved in a benchmarking exercise – support groups for African, African those in Bradford, Bolton, Tower Hamlets Caribbean and Asian parents in the area and Newham. they serve. The project also has support groups for Black short break carers that Barnardo’s in Liverpool has carried out a meet every month. Sense (see page 29) formal evaluation of its Black has a national minority ethnic network development work, two years after the and a local support group for minority appointment of its first Black worker. At ethnic families in Manchester. Short the time of writing, it is due to be break carers in Liverpool are offered the published. opportunity to be part of a Black carers’ support group. In Bradford, a group is The Leeds scheme had recently carried facilitated by an Asian social worker and out a postal survey of all families using there is also a self-help group. In Barnet, the short break scheme, and Barnardo’s a primary school for disabled children has Newham has built in service evaluations a parent-organised sitting circle. A as part of carer and service reviews with residential ‘respite’ facility has also been families. set up by parents and is now funded by the local authority. It is a purpose-built house with eight to ten places (information on minority ethnic groups

39 Short breaks

Train and develop staff, carers non-judgemental, appropriate and and short break panel members professional attitudes” (Prewett, 2000, p 48).

Promoting equality and working inclusively are skills that need to be Network and share information learned by some and continuously developed in everyone. Recruiting staff and practice with these skills in the first place is ideal, but staff development, supervision, Some of the schemes had benefited from management and training is essential to pooling experiences and strategies with develop these competencies in the others. Shared Care Network is a good workforce. catalyst for this, and can arrange national and regional events. The benchmarking The Leeds Family Placement scheme and exercise, undertaken by four short break Barnardo’s North West Fostering in schemes and mentioned earlier, provides Liverpool both organised staff training in an opportunity for discussion of practice equalities and anti-racism practice before as well as setting standards. The a Black worker was appointed. A Black Barnardo’s scheme in Liverpool has disabled woman ran the training in Leeds, networked with others in the North West so bringing a range of perspectives and of England. expertise to the work. The Liverpool project leader also wrote that, “ongoing training in managing diversity and cultural Prioritise culturally competent awareness is essential for staff”. This project also acknowledged that the issues practice might be different for projects working with a sole Black staff member, and All the components of practice mentioned sought advice and built this aspect into its in this section of the book go toward training. making up culturally competent practice. When discussing barriers to access for In Liverpool, carers also receive equal families, it is easy to spot examples of opportunities training, as they do in many racism, stereotyping and lack of other projects that replied to our competence. questionnaire. A number of schemes offer carer training in a choice of A recent initiative in cultural competence languages – some in gender-specific has developed a ToolKit for personnel, groups. Accommodating carer needs and available from the organisation below. circumstances gives clear messages that The stages that it proposes organisations the service will value their skills. The should work through are as follows: short break carers interviewed directly for this work said they valued training very 1. Who are we here to serve? (community much. In particular, their level of profiling) awareness about disability had been 2. Who are the users? (ethnic monitoring) raised, and they had lost their previous 3. Who does what? (organisational fear of disabled people and impairment. responsibility) Carers in a recent survey also found 4. Involving the user (public involvement training valuable as a way of “building in decision making)

40 What works?

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 of maintenance, developing and action planning templates, which support individuals, teams and organisations in moving forward. In this way they aid professional and/or team development plans. For further information on the ToolKit, go to www.culturalcompetence.org.uk.

An openness and willingness to reflect on practice and improve it, as well as seek and take advice from Black people, are prerequisites for cultural competence. Another fundamental principle is, ‘If you don’t know, don’t assume, just ask’.

41 Short breaks 5 Recommendations

Good coordination, dissemination and this a key feature of Social Services implementation of these Inspectorate inspections. recommendations will be important. An • Many central government initiatives overarching recommendation is therefore such as Quality Protects and Health that a national organisation (such as Action Zones are short term, and Shared Care Network) is funded to services are dependent on them for oversee, campaign for, disseminate and resources needed to encompass develop practice, particularly in diversity in services. This situation is geographical areas where Black likely to continue unless active policy populations are relatively small, and decisions are made to bring such where short break services are relatively marginal and short-term initiatives into poorly resourced. This national role, with the mainstream. associated personnel, could also develop • Issue guidance to local authorities support for Black short break staff and regarding their responses to the 2000 carers, and network with organisations Race Relations (Amendment) Act that such as Barnardo’s, which already encourages them to actively promote provides some of this. services to Black and minority ethnic families and to encourage partnership working. Specifically mention short For central government breaks for families with disabled children and young disabled people in this guidance. • Guide local authorities to ringfence • Encourage local authorities to monitor monies allocated through government their referral and assessment processes programmes such as Quality Protects to see how services to disabled and Children First so that they identify children and their families are meeting and specifically target under- the needs of Black disabled children represented groups – for example, by and families. allocating specific worker time to outreach activities. • Encourage local authorities to actively monitor their services to ensure they are ethnically representative by making

42 Recommendations

For local authorities or is it short term, insecure and seen as an ‘add-on’? • Use opportunities presented by new • Know the population you serve. legislation and policy (for example, the Ensure ethnic monitoring and record 2000 Race Relations (Amendment) Act, keeping is implemented, updated, the 2000 Carers and Disabled Children reviewed and monitored. Use the Act and the Valuing people initiative information continuously to improve [DoH, 2001e]) to strengthen services services and target under-represented and affirm your commitment to groups. inclusion. • Ensure that your equal opportunities • Even if contracted out to voluntary policy includes disabled children from agencies, the referrals of families often Black and minority ethnic groups, and have to go through the local authority. that specifically brings together Yet there is evidence of stigma attached disability and ethnicity. Use the to social work and local authority guidance provided by The Equality services that can prevent Black families Standard for Local Government and the from wanting to use them. Consider proposed Best value performance referrals in different ways – via families indicators 2002-2003 (DTLR, 2001) to themselves, community groups or other help you set goals. trusted routes. • Target increased access by Black • Audit or review workforce recruitment children and their families when acting across your services. Identify gaps and on the Quality Protects sub-objective to inequalities. Identify if, and why, some increase the provision of short breaks groups are under-represented in the to disabled children and their families. workforce. • Include the views of Black disabled • Proactively promote social work to children and young people in target communities – both to aid consultation and planning. recruitment and alleviate anxieties, and • Consult with a range of Black and to dispel myths about services. minority ethnic families, including • Network with other local authorities to children and young people, before share good practice and get ideas. The setting up new schemes or other process and principles of inclusion are services, recognising that ‘culture’ similar whether or not you have a large varies from family to family and Black population. Research has shown changes over time. that, in advancing effective services, it is • Ensure that regular feedback is leadership that counts more than the obtained from Black users and carers size of the local authority or the size of (including children and young people) ethnic groups. on access to services and on how • Interpret short break services flexibly. appropriate they feel they are. Sitting services are consistently proving • In children’s services planning, ask that popular with Black families, and in short break services specify how they particular with South Asian families. are ensuring take-up by Black minority Make sure your service can encompass ethnic groups. this in planning. • Examine the funding base of services • Attention is increasingly being drawn involving Black families. Is the funding to the need for male sitters and carers. an integral part of mainstream services, Take this seriously and investigate the potential.

43 Short breaks

For the providers of short break • Examine the make up of your scheme’s schemes workforce and carers. Are they representative of the communities being served? If not, how could they • Inclusion is a process. There can never be made more so? be enough of it, and who needs to be • Consider the balance between women included is constantly changing. The and men. The recruitment of male organisers of the best schemes realise carers is proving successful in some that there is no ‘quick fix’ and will just schemes and can be enabled by keep on trying and changing what they recruitment of male project staff. do, and how, accordingly. • Build on your successes. For example, • Ensure you have clear equal even one Black family using a scheme, opportunities policies and procedures or one Black carer being recruited, can that are understood by scheme introduce you to others and provide employees, volunteers and service you with a way into a previously users alike, and that these cover access excluded community. to services and user involvement. • Prioritise the goal of a diverse group of • Leadership and teamwork are carers, and check that your recruitment important. All scheme staff should processes do not exclude or share responsibility for access and the disadvantage particular groups; for inclusiveness of services. Regular example, at the panel approval stage. discussion of what this means is • Provide support for all staff while crucial. In particular, there is a danger recognising that Black staff may have that lone Black workers become additional support needs. responsible for ‘minority ethnic’ work, • Training should draw on the views of and can therefore be marginalised. service users and under-represented • Review the referral processes and groups. Training for cultural assessment procedures used, and check competence should be continuously they do not discriminate against and available. exclude Black families. This particularly applies to referral and assessment panels. In order to do this well, you may need to take advice from Black Gaps in local and national people. Can you consider self-referral knowledge from families in under-represented groups? • As a way of increasing access, do not In order to fill current knowledge gaps, it underestimate the value of outreach is essential that researchers, local and development work, with clear authorities and other providers take goals and targets. action in the following areas: • Include sitting services and other home-based provision in your plans. • Detailed knowledge of the different Some Black families prefer them. types of short break services used • Keep checking out the assumptions (especially sitting services and also about families and culture upon which non-family-based provision), the your service is based. If in doubt, ask patterns of use by different ethnic people what is right for them. groups and by children’s age, gender and impairment, and the geographical

44 Recommendations

location of each provision. Aggregated It is clear that policy and practice is information is not always helpful. changing rapidly and these changes draw • Qualitative data on the perceptions by on a growing recognition that the needs Black families of social work services, of Black families have been marginalised linked to patterns of use. and neglected. Barriers still remain, • Evaluation of kin recruitment as short however, largely as a result of institutional break carers, sitters or befrienders, discrimination that results in services exploring outcomes for children and failing to address diversity of need. There access to services by Black families. is no alternative to time being invested in • Take-up of direct payments by Black local research and outreach work. This families with disabled children, and by local development work could benefit Black disabled young people. from having an organisation taking on a • Under-representation of African and national coordinating and disseminating African Caribbean children and young role. people in short break care compared with their presence in institutional, There is some understanding of the long-term residential care. anxieties of families regarding culturally • Over-representation of Black children competent practice and, in particular, from some ethnic groups in special their fear of children being removed from (segregated) schools. the family, even for just one night. Also • Experiences and needs of other there is a growing appreciation of the minority ethnic groups (Chinese, importance of support services being Jewish, Traveller, Irish, for example), grounded in, and reflecting, the diversity and refugees and asylum seekers. of local communities. This has • The role of men – as fathers, as carers implications for the appointment and and as children’s services staff. deployment of staff. Currently ethnic by gender data is often missing. There is much to be learnt from the • Perceptions of social work in some various successes of the schemes that Black communities and how more have featured in this review. I have Black people might be encouraged to drawn out some of these lessons and I join. recommend them as a way forward in the • Collating and sharing good practice in further development of community-based local authorities with ‘small’ Black support services. Short breaks can make populations: work in Scotland, Wales a significant contribution to the care of or Northern Ireland could be Black disabled children and young particularly helpful. people, but they need to be continually open to interpreting and changing what ‘short breaks’ can mean. As the situation Conclusion changes, then, there will be a need for some kind of follow-up review, perhaps Arguably families from Black and ethnic in three to five years’ time. This kind of minority groups who have disabled practice-related research is an integral children are among the most part of the developmental process in disadvantaged and isolated in Britain. In service provision. this report, I have reviewed their current position in regard to gaining access to, and choice of, short break care.

45 Short breaks

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