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This chapter explores the private responsibilities and public obligations for the care of children with severe disabilities and their families. It argues for the need to develop a discourse of parental responsibility and framework of relational responsibilities that respects the rights of others, recognizes responsibility-taking and public obligations to support parents and professionals to fulfil their responsibilities to children.

This chapter provides a critical assessment of the approach adopted by the United Nations Convention on the Rights of Persons with Disabilities (CRPD) towards children with disabilities and its implications for socializing States Parties to both ‘right’ and ‘rights’ behaviour. It discusses the ways in which ‘rights talk’ for children with disabilities, itself a relatively recent development in this context, has been predominantly needs based in its substantive content, and explores whether the exacerbated disadvantage experienced by children with disabilities as a result of the particular interaction between disability and childhood is effectively addressed and given due weight by the new Convention. The CRPD's provisions are discussed in the context of children with disabilities and their potential to provide effective redress assessed. The chapter concludes with some critical reflections on the extent to which the CRPD can really be understood as minding the gap for children with disabilities.

Dealing with children with special needs because of developmental and/or physical disabilities also requires special interview skills. This chapter discusses research on children with disabilities, which includes their increased risk for abuse and greater dependency on potential abusers. Pre-interview data-gathering and adapting the interview structure to the child’s abilities are also covered.

This chapter focuses on disabled children and young people. It is highly reflective, designed to take stock of ‘where we are at’ in terms of engaging disabled children and young people — a group with a long history of exclusion — in consultations about public services, as well as in the design and implementation of social research. It develops the case on why to involve disabled children and young people. It reveals that one important reason is that research demonstrates that the views and concerns of children and young people often differ from those of their carers. It reviews the evidence of what works best in terms of both how to consult with this group on the services they receive, as well as how to involve disabled children and young people in the research process.

This chapter examines facilitating the voice of disabled children, most especially in the research context. It first reviews some ethical ground rules for consulting with disabled children, and then discusses different methods that have been developed across a range of research and evaluation projects. The chapter then summarises some of the key messages about what disabled children are telling people through such processes. The chapter also emphasises the importance of a listening culture, which encompasses emancipatory and participatory approaches in the research context.

This chapter focuses on issues for parents of disabled children in reconciling work and care in Australia and England. It considers the prevalence of disability among children and points out that in both countries almost all children with disabilities live with their parents. The chapter highlights the financial difficulties many parents face when raising a disabled child, noting that in their case parental financial and caring investments often involve life-long commitments to their child’s wellbeing, and the impact their care frequently has on their opportunities to participate in paid work. The chapter shows that women are particularly affected by work-care reconciliation difficulties in such families, which often find that the services and support their children need are offered in ways which make combining work and care difficult. Attention is drawn to the shifting policy agenda affecting families with disabled children in both countries, which includes both improvements in and risks for, these families in changing socio-economic contexts. While in both countries parents in these families have been accorded some employment rights in recognition of their additional needs, they are still left at a significant economic and labour market disadvantage compared with other parents.

This chapter examines how and why the Education for All Handicapped Children Act of 1975 (EAHCA) and its successor, the Individuals with Disabilities Education Act (IDEA), have fallen short of ambitious promises for social reform. It explains that the educational rights of disabled children, established in the Act (EAHCA), arose within a broad context of social reform and highlights the limitations of the provisions of EAHCA. This chapter argues that the EAHCA has only succeeded in enabling parents to raise individualized, technical disputes over their children's disability diagnoses and needs.

This chapter draws together 20 years of research in Britain on the costs of caring for a child with a disability and reflects upon the impact of that research on policy in the UK, in particular policy related to financial support. It begins by reviewing some of the work that has been done on the link between research and policy. Over the past 20 years there have been real changes in social security benefits for disabled children, in terms of the reasons for which they are paid, the amounts paid, and the person to whom they are paid. Research provided a bedrock of information on which government departments, the media, voluntary organizations, and think-tanks could build.

This chapter presents an argument which states that the capabilities approach, which was advanced by Amartya Sen, offers a fruitful practical and political way in making the human right to education a reality. It includes a discussion of an inclusive notion of inclusion, and discusses the UK's wish to be ratified with the UN Convention on the Rights of Persons with Disabilities. The chapter also looks at the dominance of ‘special educational needs’ and employing a ‘capabilities approach’ to promote the human rights of disabled children, among others.

This chapter focuses on the activities that were funded, supported, and developed by the partnerships which focused on four target groups chosen for detailed study by the National Evaluation of the Children's Fund (NECF): disabled children, black and minority ethnic children, gypsies/travellers, and refugees and asylum-seeking children. It highlights the similarities and differences between partnerships in working with the target groups and their families, and the impacts that were achieved. The chapter reviews the way the strategies were implemented and the impacts they had in the short to medium term, and assesses the robustness of the approaches adopted in the context of the aims of the NECF. The theories-of-change approach adopted by the evaluation is used to explore how local interpretation of national guidance was enacted in practice and thus how preventative policy was implemented.

This introductory chapter discusses the objective of this volume, which is to examine the historical, cultural and institutional conditions under which parents have advocated for their disabled children in the U.S. for the past thirty to forty years and the relation of these conditions to parents' differing resources and dispositions. This volume argues that the existing special education system is fundamentally inequitable and that privileged parents implicitly contribute to that inequity when they draw on their resources to advocate for their children.

This chapter reviews the literature for parents of disabled children to determine how the cultural construction of disabilities speaks to a particular audience. The analysis indicates relations among disability, parenting, social class and race. This chapter suggests that the literature for parents of disabled children constitutes a resource for specific groups of parents and their children and reinforces their advantages at a moment when they are most vulnerable.

This chapter examines how National Evaluation of the Children's Fund (NECF) partnerships sought to identify, define, and target specific groups of children and young people that they considered most at risk of social exclusion and thus priorities for action. It also considers ways in which selected partnerships approached the four groups chosen for detailed study by the NECF: disabled children, black and minority ethnic children, gypsies/travellers, and refugees and asylum-seeking children. The chapter then discusses the NECF's approaches to commissioning services and shows that the notion of ‘targeting’ is both technically and politically complex and highlights the contested nature of both prevention and social exclusion.

This chapter discusses the fraud done by parents of disabled children, substance abusers, and immigrants to the Supplemental Security Income (SSI). Some disabled children were lured by their parents to deceive authorities in order to receive SSI benefits, some substance abusers—drug addicts and alcoholics—applied for SSI benefits to sustain their vices, and some non-U.S. citizens used SSI as a makeshift retirement program. Hence, each of these groups figured in the extended discussion of welfare reform, and the Congress made each of those groups the targets of significant cuts in the SSI program. In general, the case showed that the SSI had allowed too many undeserving beneficiaries to remain on the rolls.

This chapter provides an assessment of the historical development of education for disabled children. It focuses on Britain between the late eighteenth century and the early 1980s. The chapter looks at three main themes: the threat to human rights posed by schooling, the inability of legal entitlements to replace segregated schooling with inclusive schooling, and the contributions of the professions to this failure. It also aims to locate education within a broader framework of social exclusion, which encompasses cultural representation and public policy.

This chapter focuses on parent-carers of disabled children, exploring their experiences of combining paid work and care responsibility in the context of Finnish and Swedish welfare systems. The chapter draws attention to the effects of disability policies on the ability of, not only a disabled person, but the whole family to live normally. The measures that have been taken in recent decades in both countries to enhance the inclusion and independence of disabled persons are shown to offer indirect support also to their parents, facilitating, among other things, their participation in paid work. However, the chapter also reveals how small, but significant differences in Finnish and Swedish disability policy shape the conditions in which parent-carers attempt to reconcile paid work and family care, Finnish parents finding their options more restricted due to scarcer and more standardised support. The effects of welfare state retrenchment are also discussed.