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This article examines the impact on disabled children and their families of the Children Act 1989 from the author's perspective of close involvement in this area of policy from 1992 to 2005. It argues that the inclusion of disabled children explicitly for the first time in children's legislation marked a necessary step in seeing disabled children as children first. Two main areas of concern about the effectiveness of the Act's implementation are highlighted. First, provisions in the Act for disabled children living away from home in health and education establishments have been widely ignored and are now seen as inadequate. Second is whether the provisions regarding short breaks (respite care) have been effective in providing the sort of support that families need at the required levels. The article suggests that passing legislation may be insufficient in itself to have much impact on the lives of disabled children.

In the UK, the Children and Families Act aims to create one assessment process for children with special educational needs or disability, through Education, Health and Care Plans. It also aims for greater participation from children and young people in decisions about their own lives. Current evidence suggests that children’s needs and desires across education, health and social care are not being fully met, partly because adult agendas drive policy, practice and standards of care. Furthermore, little attention is paid to the way in which disabled children and young people are included either within decisions about their own support or within research processes. The purpose of this paper is to present a research process designed to address these issues.

Six disabled young people co-led this participatory research project; for the first time, disabled young people had the opportunity to define a research agenda which spoke to what “quality” might look like in planning for their own future and that of other disabled children and young people.

This paper presents findings from this process, addressing important ethical issues relevant for policy, practice and research, identified through this rights based, collaborative way of working in partnership. Three key issues were identified and are explored here. They include first, tensions between young people becoming leaders and dominant ideas about safeguarding and child protection; second, being empowered through engagement within the project yet restricted in other areas of personal life and, finally, the emotional impact on new researchers of gathering evidence of a continuing lack of autonomy for disabled children and young people. We argue that challenging dominant notions concerning the participation and protection of disabled children is required in order to ensure that they access their right to be decision-makers in their own lives, and to being empowered within research processes.

This is the first disabled young people-led study to investigate quality and rights for disabled children and young people using this rights-based methodology.

Issues related to disability and childhood are frequently examined across the social sciences and humanities. Many researchers conduct studies with disabled children as the focus of study, as research participants and/or as research drivers. Disabled children represent two categories of identified vulnerability, thus, requiring stringent ethical boundaries in terms of recruitment, consent, research methods, analysis, disclosure and knowledge mobilisation. Although many safeguards apply to research with all children, the focus on disability and disabled childhoods initiates further ethical scrutiny. In this chapter, the authors examine a number of ethical dilemmas that have emerged when conducting research with, and in relation to, disabled children. In particular, the authors will examine the roles of disabled children and youth in advancing research on policy and practice within education and care sectors. The authors query the possibilities and limitations that emerge when employing institutional ethnographic, participatory action and phenomenological research. The chapter unpacks some of the tricky tensions around asking children to speak about disability and share their experiences of disablement when disability is so frequently stigmatised. The authors examine the impacts of predetermined categories of impairment within quantitative research. Across methodologies, data collection based on assumptions of impairment can skew analyses towards a medicalised framework of disability, leaving little room for socio-cultural perspectives on disablement, including how these approaches trigger ethical issues around notions of representation and agency in research with disabled children.

Twelve percent of families in the United States have a child with a disability, yet little is known about the long-term consequences of growing up with a disabled sibling. This study builds on previous research regarding disability effects on families and offers an additional view on the linked lives of families and, in particular, siblings. Using secondary data from the National Longitudinal Survey of Youth 1979 Children and Young Adults, this study examines the odds of college completion among young adults with a disabled sibling during childhood. Specifically, I examine the gender differences among those who had a sibling with a disability. Women are more than 35% less likely to complete college if they had a disabled sibling during childhood; there is no significant difference by sibling disability status for boys. To understand whether children in low-resourced families are particularly penalized by having a disabled sibling, I examine whether various family resources attenuate the low graduation odds among those who had a disabled sibling. I find that having stably married parents during childhood largely eliminates the college completion gap between those with and without a disabled sibling. However, increases in mothers' education or family income do not attenuate the college completion gap. By identifying this gender disadvantage in college completion, this study shows that disabilities have consequences not just for disabled individuals but for their siblings as well, shining a light on a hidden cost of disability on families.

In this chapter, we examine how the media in India constructed the lives, needs, and desires of disabled children in India during the tumultuous pandemic.

Through critical discourse analysis, we address how children's bodies and needs have been explicitly discursively constructed as “excessive,” while implicitly drawing upon neoliberal, ableist logics of loss and productivity.

We foreground how the framing of COVID-19 as a disaster in the Indian context obscures state neglect, suggesting that inequality has been the result of the pandemic rather than the limits of state care under neoliberal ableism. Despite the recognition of gaps in the care received by disabled children, neoliberal, entrepreneurial solutions have emerged as a new, widely touted form of care during the pandemic.

Through our analysis, we highlight how disabled children have been neglected by the state and constructed as burdensome and vulnerable. We argue that this occurs when disabled children's bodyminds do not conform to an ideal of the self-reliant, independent citizen under the logics of neoliberal ableism. Our work demonstrates how children with disabilities are discursively rendered absent from conceptualizations of normate citizenship, unless seen as contributing to current or future aspirations for state productivity and growth.

States that historically, students with disabilities in the public schools in the USA were subjected to discrimination in the form of segregation from non‐disabled students. Also reports that much of this discrimination has subsided in recent years owing to successful advocacy by parents and community organizations before the Congress of the United States and both the federal and state judiciary. Reveals that national legislation was created so as to protect the education rights of such students and the courts have provided tests for their integration into school systems. Notes that, currently, there is some concern that this advocacy has gone too far and that court decisions authorizing “full inclusion” misinterpret the full extent of the law. Examines the scope of education for disabled children and provides a legal analysis of the educational placement of students with disabilities in the “least restrictive environment”.

In this chapter, we examine how the schooling experiences of disabled children have changed during COVID-19, how families' engagement, advocacy and support of their children have shifted during the pandemic, and how race, class, and other axes of inequality shape these processes.

We used a semi-structured interview protocol with families of disabled children, asking them about their experiences with their children's schools before and during the pandemic. We analyzed the interview data using “flexible coding” and the constant comparative method.

COVID-19 has had wide-reaching effects on disabled children's schooling experiences, yet these effects varied, particularly at the intersections of disability with race, class, linguistic status, and gender. Remote learning and other pandemic-related changes to schools exacerbated extant inequalities in children's educational experiences, as well as in families' ability to effectively advocate for their children in school.

This research provides important information about how the pandemic has exacerbated inequality at the intersection of disability, race, and other axes of inequality. Moreover, it provides a lens to examine ableism and other systems of oppression in schools. The findings have crucial policy implications, pointing to the necessity of equitably allocated, high quality, inclusive educational services for disabled students, as well as to the need for special education policy that does not rely on individual family advocacy to allocate appropriate services.

The purpose of this paper is to investigate the meaning of the socially constructed identity of Al‐Ma'brouk in rural Egypt.

The principal qualitative tool of data collection included intensive interviews with a sample of ten parents from two villages in lower Egypt.

The two main outcomes which emerged from the research were first, the social construction of intellectual disability in rural Egypt has contributed to the emergence of a distinctive culturally‐mediated social identity called Al‐Ma'brouk, or the “blessed”, with ascribed social roles; and second, this socially constructed identity has a positive impact on the families of intellectually disabled children.

The first finding concerning the local social construction of intellectual disability corresponds to previous research on how culture shapes “disability”. The second finding that ascribed social roles of intellectually disabled children have rooted social rationalizations raises a general question concerning how rural communities in Egypt justify and cope with intellectual disability.

Many studies on intellectually disabled children overlook their social roles in society, and mainly envision disability as a barrier and a familial adversity. The paper contributes to the debate that intellectual disability is a social construction rather than a limiting factor.

International rates of child maltreatment, particularly for children with disabilities are difficult to determine due to a lack of centralized data bases, a tendency to not keep consistent records of disability characteristics in cases of suspected maltreatment, and in extreme cases, because maltreatment is not acknowledged or addressed publicly (Bonner et al., 1997; Morris, 1999). Therefore, most of the data on prevalence rates of maltreatment in disabled children are from western cultures such as the U.S., Canada, and the U.K. There is some evidence to suggest that the rates internationally are probably at least equal to those in the U.S. samples (Cooke & Standen, 2002; Gringorenko, 1998). Finklehor (1994) found that the rates of sexual abuse were consistent across nations for both males and females. The nations in that study included most European countries, Canada, Dominican Republic, Australia, New Zealand, and South Africa. On the other hand, Forrester and Harwin (2000) note that measuring child maltreatment internationally is nearly impossible due to the varying cultural norms, national resources, and the tendency for many forms of maltreatment to go unnoticed. They suggest that an alternative to measuring maltreatment internationally may be to evaluate each nation’s willingness to both address issues regarding the rights of children and to provide services to children who are maltreated.

The representation of ‘the child’ within children's services and the representations of ‘risk’ and its management have implications for disabled people hoping to qualify for and work within certain professions. This article assesses the relevance for children's services of findings from the Disability Rights Commission's Formal Investigation into the impact of professional regulation on disabled people studying and working within three public sector professions in Britain ‐ nursing, social work and teaching. Many professional regulations include varied and vague requirements for ‘fitness’. These are interpreted and implemented differently, often informed by unexamined negative assumptions around disability. Disabled people, particularly those with ‘hidden disabilities’, can be discouraged from disclosing their conditions. This deprives them of the support and adjustments necessary for them to practise safely and effectively. Professional regulation can thus paradoxically induce a false sense of security. The various professions are urged to review and update their regulations, guidance and policies in order to ensure concordance with recent developments in disability and wider antidiscrimination legislation.