Short breaks for families caring for a disabled child with complex health needs

Data from two research studies concerned with disabled children who have complex health needs were analysed in relation to families' experiences of accessing short breaks (respite) services. Many families experience serious problems finding suitable services which can cater for both their child's complex health needs and their own need for significant levels of support. This paper highlights which services families were using and the difficulties of obtaining a coherent and consistent package of support. Regulatory concerns relating to the piece-meal provision of services and use of children's hospices are raised along with recommendations for improving policy and practice.     

Children and young people with a hidden disability: an examination of the social work role

Summary There has been little research attention paid to the natureand extent of social work intervention with children and youngpeople with invisible impairments. The recent study describedhere found that children and young people with a hidden andstigmatizing impairment received a social work service whichwas at a minimal level. The children and young people were affectedby physically induced incontinence, and described how they facedan environment which created particular tensions. Their parentsconcurred with this overall picture and reported unmet needs.Recommendations are made about social services input, but itis recognized that the level of social services interventionavailable to these families may, in part, be a reflection ofa low priority assigned to disabled children generally. It isargued that, although such an assignment is a common picturein recent research about social services provision to disabledchildren, a change in priorities is needed which recognizesthe importance of coherent support to disabled children as ameans of improving their environment and thereby reducing families'stress levels and the likelihood of abuse or rejection.     

The proof of the pudding: What difference does multi‐agency working make to families with disabled children with complex health care needs?

More than 20 years of research with disabled children, young people and their families has highlighted the need for the different professionals and services that support them to work more closely together. The British policy and legal framework for ‘joined up working’ has never been stronger. However, there has been an assumption that multi‐ or inter‐agency working will inevitably be a ‘good thing’ for families. This paper discusses findings from a 3‐year research project which looked at both the process and impact of multi‐agency working on families with a disabled child with complex health care needs. Interviews with 25 parents and 18 children and young people who used six developed, multi‐agency services were carried out. Findings suggested that the services had made a big difference to the health care needs of disabled children but were less able to meet the wider needs of the child and the family – particularly in relation to social and emotional needs. Multi‐agency working appeared to make some positive, but not significant, differences to the lives of families.     

Services for disabled children: integrating the perspective of social workers

The paper addresses questions about the appropriate focus and direction of social work with disabled children, by triangulating parental views with those of social workers. Previous studies concerning services for disabled children have concentrated either on the views of parents or, less often, on those of service providers. This study adds to the picture by linking the two together and allowing service providers to comment on the views of service users. Parents of nine disabled children were inter-viewed following the introduction of a specialist disability team in an inner city borough, following the implementation of the Children Act 1989. The interviews took place over a 9-month period in 1995, and the comments of parents were then shared with social workers both from the borough concerned and from elsewhere. The parents' views reflect confusion about service provision, ignorance of their children's legal (as opposed to moral) rights, a preference for proactive service provision and the need for emotional as well as material support, the last framed variously as counselling, advice and someone to listen. There was little evidence that the Children Act, which could have facilitated improvements in all these areas, had made any discernible difference. Social workers' comments on these findings, with which they identified strongly, revealed a lack of confidence in their own abilities, a lack of clarity in their role and increasing disillusion with the services of their organizations. It is argued that in order to meet parents' expressed needs, service providers require a confident and fundamental shift in emphasis back to the role of social worker as provider as well as enabler.     

社区残疾人服务现状调查——以武汉市为例

残疾人社区服务是残疾人服务体系的重要组成部分。掌握当前社区残疾人服务的状况是完善社区残疾人服务的重要环节。本文以武汉市36个社区为样本,从社区工作人员的专业认知情况、社区工作人员参与社区残疾人服务情况、社区实际提供的残疾人服务内容、残疾人对服务内容的反馈等方面进行了抽样调查,以期为政策的制定提供参考。     

Regional Welfare System Developments in Russia:Community Social Services

Micro-level studies of welfare service developments are largely absent from the literature on Russian social policy issues, which tends to concentrate on macro-level social security arrangements. This paper highlights the emergence of community-based social services in the post-1991 era, examining their development in two provincial Russian cities, based on an empirical study carried out in 1998. The paper adds to a growing literature which seeks to understand "welfare systems" from the perspective of welfare services as opposed to a social security or policy-based approach. It takes a user-group perspective on the services by looking at their use by, and relevance for, disabled children regarded as having learning difficulties, and their families. The empirical data indicate the shape of "new" services in the field sites, the means by which such institutions were maintained and their integration into the welfare sphere as a whole. Their development and maintenance at the local level is explained in part by socio-economic, political and administrative factors in these regions. By highlighting the various factors that help to maintain welfare provision and drive change at the local level, the case studies indicate the possible shape of future welfare developments in Russia as a whole.     

'Mingling together': promoting the social inclusion of disabled children and young people during the school holidays

The promotion of social inclusion of disabled children and their families is currently high on the UK political agenda. Research shows that disabled children and their families are highly disadvantaged, both economically and socially. This paper reports some of the findings of a qualitative study, entitled On Holiday! , which involved analysing the views of 297 people across six local authority research sites in England including 86 disabled children and young people. The study showed that many disabled children and their families experienced high levels of social isolation and exclusion during out-of-school periods and during the school holidays in particular. The paper recounts some of the experiences of disabled young people and their families and ways in which local authorities can promote their social inclusion. We argue that disabled young people and their families can only be truly socially included and empowered when all levels of the local authority (managers, officers and elected members) recognize the rights and entitlements of disabled children and have the political will and commitment to implement them.     

Looking for best practice in caring for disabled children: a case of socialized foster care in China

This study focuses on the problems associated with caring for children with cerebral palsy (CWCP) in Chinese State Children's Welfare Institutions (SCWIs). It considers how to place these children with foster families and also provide them with the best rehabilitation services. In a pilot project, one SCWI trained foster parents as rehabilitators and provided services to CWCPs living with foster families in selected rural communities. The practice was very successful over the last decade, and more than 600 CWCPs in these communities are growing up happily. Hence, specialized foster care projects could be a solution for all SCWIs in China, where most of the institutionalized children are disabled.     

Access to Services as a Civil and Social Rights Issue: The Role of Welfare Professionals in Regulating Access to and Commissioning Services for Disabled and Older People under New Labour

This paper draws up a theoretical framework of citizenship, based on Marshall's thesis, that encompasses the idea of access to welfare services (using the example of community care services for disabled and older people) as a civil and social rights issue. The authors critically examine current policy developments in the NHS and local authorities under New Labour that emphasize partnership, particularly the proposals and provisions made in 'The New NHS' and 'Partnership in Action'. Their theoretical framework is used to explore issues concerning access to and the commissioning of health and social care services under New Labour. They conclude that the role of welfare professionals, particularly GPs and social services workers, and their relationships with service users, patients, carers and their families under New Labour presents a continuing challenge to the citizenship status of disabled and older people.     

Enablers of help‐seeking for deaf and disabled children following abuse and barriers to protection: a qualitative study

Research internationally has highlighted the increased vulnerability of deaf or disabled children to abuse and the frequently inadequate response of services. However, first‐hand accounts of deaf or disabled children have rarely been sought. This paper reports selected findings from one of the first studies exploring experiences of deaf and disabled children regarding help‐seeking following maltreatment. Innovative and sensitive research methods were employed to support 10 deaf or disabled people (children and adults) to take part in guided conversations. The study identifies three enablers of help‐seeking of deaf or disabled children: the capacity of adults to detect abuse and respond to disclosures, supportive relationships or circumstances which facilitate disclosure and for Deaf children, access to registered interpreters. Barriers to protection related to these are also discussed. Recommendations directed at policy makers, practitioners and families include education and awareness raising amongst practitioners, children, parents and carers; addressing isolation of deaf and disabled children; providing comprehensive support services that address the needs of the child holistically; ensuring that the voice of the child is heard; routine access to registered interpreters for Deaf children within mainstream and specialist services and measures to address disablism at local and institutional levels.     

Children in Need and their Families: Outcomes of Referral to Social Services

Jane Gibbons. Social Work Development Unit. University of East Anglia. Norwich NR4 7TJ. Summary The Children Act provides a clear remit to local authoritiesfor the provision of services to children in need and theirfamilies. Increased service provision needs to be supportedby evaluation of effectiveness. The paper describes an attemptto develop instruments for this purpose. In a sample of 122families containing children under 14 who were referred to socialservices departments, indicators of family needs, services receivedand their outcomes were used to examine whether services werematched to needs; and whether they had any effect on familyproblems in the short term.     

Quality Indicators: Disabled Children's and Parents' Prioritizations and Experiences of Quality Criteria when Using Different Types of Support Services

Correspondence to Dr Wendy Mitchell, Social Policy Research Unit, University of York, York YO10 5DD, UK. E-mail: wam1{at}york.ac.uk Summary Current health and social care policy seeks to develop and refinestandards of service quality. However, policies have so farlargely focused upon statistically based service output indicators.Recognizing the importance and yet limitations of this, especiallyin services for disabled children and their families, this paperdraws upon qualitative and quantitative data to explore indicatorsthat are meaningful and relevant to disabled children and theirfamilies. Results demonstrate the need to look beyond a genericfamily-based perception of service quality, as children andparents value different aspects of service quality and prioritizedifferent indicators when using different types of services.Although some indicators are regarded as ‘core’quality indicators, irrespective of service type, others areonly prioritized for specific types of services.     

The Integrated Children's System and disabled children

The Integrated Children's System (ICS) is premised on a single approach to assessment/review, ideally providing a more coherent, comprehensive and efficient system of electronic information recording and sharing among different groups of practitioners. Despite its holistic aims for all children in need, questions have been raised about the use of ICS with certain groups of children, especially those who do not follow normative patterns, such as disabled children. This paper explores the introduction of ICS with disabled children and their families within four pilot authorities in England and Wales. Drawing on interviews and questionnaires with 16 social workers and 22 families experiencing assessment/reviews under the new ICS, this paper suggests that important questions and concerns regarding the appropriateness and usefulness for disabled children of the ICS remain, especially the use of 'standardized' exemplars. Five disability-specific areas of concern are identified, and their implications are considered.     

Participation of Disabled Children and Young People in Decision Making Within Social Services Departments: A Survey of Current and Recent Activities in England

A survey of all social services departments in England was undertakenin order to identify and investigate current work concerningthe participation of disabled children within decision makingregarding their own care and in service development. Developinga culture of, and good practice in, children’s participationis integral to government policy. Results demonstrate that disabledchildren are being involved in a range of decision-making areas;however, participation is not yet embedded or sustained acrossall social services departments, and the involvement of disabledchildren at a higher strategic level is still rare. The participationof disabled children needs further development including moreevidence on which factors can support and promote disabled children’seffective participation.     

Families on the brink: the effectiveness of family support services

This paper presents findings from a study of the costs and effectiveness of family support services offered to 40 families with a high level of need, in two neighbouring local authorities in North Wales. It describes the level and type of services offered by different agencies in each of the authorities, estimates the costs of these services, and assesses outcomes for the families receiving them after three months. Information is also provided about families’ experience of the support they received, and the kind of help they would have liked. Parents’ well‐being and family functioning were found to improve over the intervention period in both authorities, although only to a limited extent. Improvements were greater among those who were living with partners, and less among families identified by social workers as having financial difficulties or problems with drug or alcohol abuse. Respondents who rated their problems as very severe showed less improvement. The pattern of service provision and the costs involved turned out to be similar in both authorities, so it was not possible to reach conclusions about the relationship between services and outcomes. However, a number of themes emerging from the data are discussed, including the role of day care services in supporting families with young children, the impact of poverty and deprivation on parents’ ability to provide good care for their children, and the importance of an interagency response to children's and parents’ needs. The article also includes a discussion of problems encountered in undertaking comparative outcomes‐based research and cost‐effectiveness analyses in the social welfare field.     

Advocacy for disabled children and young people: benefits and dilemmas

Recent policy has emphasized the need for advocacy services for children and young people, developments that have gone hand‐in‐hand with greater levels of participation of young people in decision‐making. Advocacy for disabled young people is especially important, as they are a particular vulnerable group and have, traditionally, been even more excluded from decisions about matters affecting their lives. This paper reports the findings, as they relate to disabled young people, from a study that investigated the role of advocacy for looked‐after children and children in need. The paper highlights some of the benefits of advocacy for disabled children, the dilemmas facing advocates between advocating and acting in someone's ‘best interests’, identifying the client and the boundaries between advocacy and social work. It argues that time given to establish a close relationship with a disabled child or young person is crucial if advocacy is to be effective and participation in decisions affecting their lives a reality.     

Locus of Control, Coping and Proto Prevention in Child and Family Care

Despite a sustained emphasis that appropriate responses aremade to children and families in need, recent policy documentsexpress a concern about the high thresholds for receipt of children’sservices preventing many high-need families from accessing help.Where this is the case, families are liable to have to fallback on their own resources. This raises the question: how dothese families, particularly mothers (frequently the primarycare-givers), cope? Locus of Control (LoC) has been shown tobe a significant factor in the confidence, and capacity, ofindividuals to respond to their external environment. This articlefocuses on applicants for children’s services who didnot meet the thresholds for service receipt, focusing on theircoping strategies in the light of the LoC of the women. Thefindings show that LoC did have an impact on coping strategies,and, in particular, points to the greater likelihood of avoidancestrategies in those with an external LoC and of stress underminingActive Coping by those with internal LoC, in the absence ofservices. These are discussed in the light of prevention, recentlyconceptually extended to include activities by the families,as well as the provision of services.     

Parental Entrepreneurship: A Consumerist Response to Professional Dominance

This article explores the development of activism among parents of disabled children. Based on research with parents using a symbolic interactionist perspective, it discusses the predisposing conditions and situational contingencies that encourage parents to become activists for their children. Parental activism is viewed as a response to the failure of society to provide sufficient or appropriate resources to meet the needs of disabled children and their families. It involves seeking information and control and challenging authority. Development of the role is nurtured by interactions with others in similar situations and may result in a careerlike pattern, or entrepreneurship, as a way of life.     

A Comparison of Subsidized Guardianship and Child Welfare Adoptive Families Served by the Illinois Adoption and Guardianship Preservation Program

Abstract

This study compares the outcomes of 113 subsidized guardianship families and 733 child welfare adoptive families served by a therapeutic counseling program for adoptive/guardianship families at risk of child placement or dissolution. No significant differences are found in the percentage of children in placement at the end of services or the level or parental commitment to their children. Children in subsidized guardianship families are more likely to be minority children who are older at removal from their birth families and at placement with their current families. Also they are less likely to have a history of abuse than children in adoptive families.