Every Child Matters outcomes: What Do They Mean for Disabled Children and Young People?

To date, little attention has been paid to the appropriateness of the Every Child Matters (ECM) outcomes framework to disabled children. ¹ 1 For brevity, the term children is used to apply to children and young people up to 19.
This article reports findings from a research project which sought the views of disabled children and their parents about their desired outcomes. Twenty‐nine children and 90 parents were interviewed. The findings indicate that ECM outcomes are appropriate to disabled children but can have different meanings. In addition, the need to recognise the importance of maintaining outcomes, as well as progress, is highlighted.     

New Voices in Iceland. Parents and Adult Children: juggling supports and choices in time and space

This paper deals with parents' perspectives and experiences of bringing up children with a variety of impairments in Iceland, and how they impact the young disabled adults' approach to the status of adulthood. The paper is based on a qualitative study that explored perspectives and experiences of 36 young disabled adults (16-24 years old), their parents, friends and teachers. The purpose of this paper is to share themes related to patterns of parents' reactions and choices when coming to terms with parenting a disabled child, the support they found from their social network and professionals, and their sons or daughters' subsequent views of themselves and their prospects as young adults. The paper includes different perspectives on adulthood and the extent to which the young disabled people expect to reach that status or remain as 'eternal youth' enmeshed in segregated services. Findings show that the type and nature of early support for parents of disabled children is critical for the young adults' approaching adulthood in regular society or expecting to remain in the limbo of 'eternal youth' within segregated settings. Early 'betrayals' may, however, be revisited at each subsequent transition point. Furthermore, parents and their disabled children who struggled for social inclusion could obtain full active membership in society, even against social and physical barriers, and medically defined disability labels.     

‘It's afforded us a huge flexibility’: the impact of ‘Disabled Children's Access to Childcare Pilots’ on families with a disabled child in England

For many parents of disabled children, finding affordable and suitable childcare that meets their needs is very challenging. Research in the UK has shown that parents with disabled children experience barriers not just with cost, but also accessibility, the attitudes of childcare providers and in getting good information about sources of childcare. The Disabled Children's Access to Childcare (DCATCH) pilots was an initiative designed to improve access to childcare for disabled children in England. As part of an evaluation of DCATCH, qualitative interviews were carried out with 38 members of 22 families who had received support from the initiative. All of the families reported positive outcomes and highlighted: a beneficial impact on the parents' capacity to work; enjoyable experiences for the disabled child; increased confidence and independence for both parents and children; and the creation of time for parents to pursue other activities. The results of the DCATCH initiative support other research which argues that whilst cost is a significant factor around childcare choices for families with a disabled child, having confidence in the childcare provider's ability to meet specific needs (including complex health care needs) and providing positive experiences for the disabled child are also key, determining factors.     

‘Chocolate … makes you autism’: impairment,disability and childhood identities

This paper discusses perceptions and experiences of impairment and disability from the perspectives of learning disabled children, their parents and their social workers. The author reports on findings from her doctoral study that adults often fail to take into account the views and experiences of learning disabled children. As a result, these children developed their own interpretations of impairment and disability based on their experiences and interactions with others. Whilst this indicates that they are active social interpreters, it also suggests that adults should make greater efforts to inform and consult learning disabled children. The author concludes by reflecting on the relevance of these findings to contemporary theories of disability and childhood.     

Permanence for disabled children and young people through foster care and adoption: A selective review of international literature

Children who have been removed from their parents need stability and permanence; this is as true for disabled children as it is for others. Yet many children are subject to extended periods of uncertainty and instability. Growing attention has been paid to the need to achieve permanence within a timescale which meets children's needs. As disabled children are over-represented in looked after (in care) populations it is especially important that their needs are considered when formulating policy and practice in this area.This review of literature covers international material related to stability and permanence for disabled children, in particular permanence achieved through fostering and adoption. A scoping method was used to identify and analyse a broad range of material. Ninety texts were included in the review, including material from the US, the UK, Canada, Australia, China and the Netherlands. Empirical research included quantitative, mixed methods and qualitative studies. Other sources included literature reviews and a small number of research-based ‘think pieces’ and briefings.Disabled children often have permanence outcomes and experiences which differ from those of other children; most often they are disadvantaged by systematic features of services and by the latent disablism of decision-makers, professionals, carers and potential carers. The findings also show that disabled children are not a homogenous group and that characteristics such as age, gender, ethnicity and impairment type show complex relationships with permanence through adoption and foster care.Important gaps in current knowledge are identified, including disabled children's views and experiences in relation to achieving permanence. Several areas of policy and practice are highlighted where effort to improve permanence needs to be made. These range from tackling negative professional attitudes about the prospects of placing disabled children to further development of non-traditional approaches to the recruitment of foster carers and adopters.     

The ‘Go‐Between’: Low‐Income Children Negotiating Relationships of Money and Care with Their Separated Parents

The UK is moving from a centralised administrative child support system to one of private ordering where the state will only intervene under limited circumstances. This requires parents to agree and set up suitable, sustainable arrangements. This has particular implications for children, although the child perspective is often overlooked. This article situates children as active social agents exploring their interactions and negotiations with their separated‐parents with regard to money, time and parenting. It argues that policies that do not take into account the agentic child's experiences and perspectives may fail to address the impact of policy on children's lives.     

Disabled children,child protection systems and the Children Act 1989

It is now widely recognized that disabled children are particularly vulnerable to abuse but that a number of factors get in the way of protecting them. This article discusses research on the implementation of the Children Act as it applies to disabled children and the findings from in‐depth interviews with young disabled people. The research concluded that: current child protection systems are not addressing the particular needs of disabled children; the Children Act regulations on short‐term and long‐term placements are often not complied with; and disabled children and young people have little say in decisions which affect them and few opportunities to communicate their experiences. Copyright © 1999 John Wiley & Sons, Ltd.     

Coping and Helping to Cope: Perspectives of Children of Palestinian Political Detainees

This qualitative study investigates how children of Palestinian political detainees in Israeli detention cope with their fathers' absences. Researchers conducted 16 semi‐structured interviews with children, mostly aged 15 and older in the West Bank. Three themes are discussed that emerged from the interview data: how children cope with their sadness; the children's perspectives on community support; and older children's support to siblings and parents. Practitioners can support children by providing counselling to mothers and organising interventions, which give children the opportunity to connect. It is important that the agency of the older children is taken into account and built upon.     

Family Involvement in the Residential Treatment of Children: A Systemic Perspective

When children are placed in residential treatment, a number of underlying messages are often conveyed: the child is the problem, the child's parents are the problem, and the treatment centre has the answers. Consequently children may feel rejected and parents may feel blamed. These views reflect lineal perspectives which have not been adequately addressed in the literature on residential treatment. The aim of residential treatment is to change the child's behaviour in ways which parents are unable to achieve at home. This paper proposes that the child who is placed in residential care may be caught between the parents and the treatment setting: if the child positively responds to treatment, parents could easily feel inadequate or incompetent, a dynamic which is obviously counter productive to successful treatment. The paper argues from Milan and other systemic views, that family and treatment systems be taken into consideration in planning treatment strategies.     

Doing research with children and young people who do not use speech for communication

Despite emphasis in policy on participation of disabled children,¹ we still know relatively little about how to obtain the views of disabled children with significant communication impairment and their views are often overlooked in planning and service provision. This article describes how the views of children who do not use speech were accessed in research aiming to identify disabled children and young people's priorities regarding outcomes of social care and support services. The main challenge was to develop a method that was reliable, non‐threatening, enjoyable and relevant to individual children, as well as enabling children to think beyond their everyday life and express what they aspire to.     

Child abuse,child protection and disabled children: a review of recent research

This paper reports the results of a scoping study that reviewed research about child abuse, child protection and disabled children published in academic journals between 1996 and 2009. The review was conducted using a five stage method for scoping studies. Several studies have revealed a strong association between disability and child maltreatment, indicating that disabled children are significantly more likely to experience abuse than their non‐disabled peers. Those with particular impairments are at increased risk. There is evidence that the interaction of age, gender and/or socio‐cultural factors with impairment results in different patterns of abuse to those found among non‐disabled children although the reasons for this require further examination. It appears that therapeutic services and criminal justice systems often fail to take account of disabled children's needs and heightened vulnerability. In Britain, little is known about what happens to disabled children who have been abused and how well safeguarding services address their needs. Very few studies have sought disabled children's own accounts of abuse or safeguarding. Considerable development is required, at both policy and practice level, to ensure that disabled children's right to protection is upheld. The paper concludes by identifying a number of aspects of the topic requiring further investigation. Copyright © 2010 John Wiley & Sons, Ltd.     

Desired Outcomes for Children and Adolescents with Autistic Spectrum Disorders

Within children's services, frameworks for assessing outcomes have been developed in the absence of consultation with children with autistic spectrum disorders and their parents. The research reported here worked with parents, other key adults and children with autistic spectrum disorders to identify desired outcomes. It found similarities with non‐autistic children in terms of the broad types of outcomes desired. However, the presence of autism meant either new or different sorts of outcomes were reported. Implications in terms of the ways outcomes for autistic children are defined and measured, and the role of services in achieving outcomes is discussed. © 2006 The Author(s).     

Teenagers’ Internet Use and Family Rules: A Research Note

The Internet poses challenges to parents who want their children to take advantage of online resources but also want to protect their children from questionable content. Using data from 749 dyads of American parents and their teenage children with Internet access, this study finds that the majority of parents report regulating their teenage children's Internet use, but parents report more monitoring (61%) than teens report (38%). Multivariate regression analyses indicate fathers, younger parents, parents who use the Internet with their children, and parents with younger teens engage in a higher level of parental monitoring. This study provides a first look at parental monitoring of children's Internet use and points to the need to study family rules from both parents’ and children's perspectives.     

Families with Children with Disabilities - Inequalities and the Social Model

This article suggests that families with children with disabilities experience a range of inequalities that families with children without disabilities do not suffer. It draws on a recent qualitative study to illustrate the way in which it is not just disabled people, but in the case of disabled children, whole families that suffer from unequal opportunities and outcomes. We draw on the social model of disability to show that the lives of these families are often characterised by financial hardship, stress and anxiety as a result of social barriers, prejudices and poorly conceived service provision. The social model of disability is usually drawn upon to illustrate the way in which social organisation disables people with impairments. In this instance, we illustrate the way in which social organisation disables not just the family member who has an impairment but the whole family unit. By applying this model of disability, new ways of creating practices and policies for these families can be developed which incorporate their views into the heart of the policy-making process.     

Compliance and Internalization in Preschool Foster Children

Child compliance and internalization are socio-cognitive developmental processes which are critical for children's social outcomes in multiple arenas. These developmental processes are found to be compromised in maltreated children. The current study was designed to add to the extremely limited literature on compliance and internalization in maltreated children in foster care. Compliance and internalization tasks were administered to preschool foster children, videotaped and later coded. Through parent-report questionnaires completed by the foster parents and observations of the foster home, the relation of compliance/internalization to child behavior problems, foster care experiences, and the foster home environment was examined. Findings revealed that most children showed committed compliance, but over 50% of children exhibited “deviation” behaviors in the internalization task. HOME acceptance scores (via observation of parent and child in home setting) significantly contributed to children's compliance levels but did not significantly contribute to their internalization. Internalization was related to children's externalizing behavior problems. These findings are considered in the context of future research and practice with respect to young children in foster care.     

‘This is real now because it’s a piece of paper’: texts,disability, and LGBTQ parents

What role do texts play in LGBTQ (lesbian, gay, bisexual, transgender, and queer) parents’ experiences of disability service systems? In interviews with 15 LGBTQ parents of disabled children in Toronto, Canada, participants selected documents to be used as a focus for discussion. Parents considered how LGBTQ identity and other intersectional identities influenced their experiences of institutional texts including adoption certificates, intake forms, and assessments. Findings suggest that documentation practices can operate as forms of systemic gatekeeping. LGBTQ identity was sometimes very significant in parents’ accounts, and sometimes less central than other aspects of their families' identities and experiences.     

Negotiating with Gatekeepers in Research with Disadvantaged Children: A Case Study of Children of Mothers with Intellectual Disability

Child‐oriented researchers have long recognised children's right to be heard in research about their lives and, as experts about childhood, their perspectives should inform social policy and research. While it is encouraging that more children are consulted about matters of importance to them, some children's voices remain silenced. When researchers have to liaise with adults, such as parents and social workers, to recruit children, these adults make decisions about who participates. An account of recruiting children of mothers with intellectual disability, a potentially disadvantaged group, is presented. The reasons for gatekeeping and the implications of this are explored.     

‘I’m not really sure but I hope it’s better’: early thoughts of parents and carers in a regional trial site for the Australian National Disability Insurance Scheme

The National Disability Insurance Scheme (NDIS) is one of the most significant initiatives in Australian social policy history. Its complexity has been compounded by a fast-paced introduction and ongoing refinement throughout the initial trial phase. Parents and carers of very young disabled children face particular challenges accessing and navigating NDIS systems. This article presents findings from a mixed-method pilot study examining the perspectives of parents and carers of disabled children in one NDIS trial site – the Hunter Region of New South Wales. The research highlights a number of policy assumptions potentially impacting on NDIS take up for young disabled children and their families in regional contexts. Based on research findings a number of policy suggestions and improvements for disabled children and their families entering the NDIS and other individualised funding schemes are outlined.     

Assessment of Children in Need in a Post-Soviet Context: Reflections of Child Protective Workers in Estonia

Child protective worker perspectives and principles are known to affect practitioner–-client interaction. However, there is little research on the principles underpinning workers’ assessment activities in transitioning post-Soviet societies where child protection is a relatively new field. This article presents the findings of a small-scale, qualitative study that explored the perspectives and principles that Estonian child protective workers utilize to inform their assessments. The respondents (N = 20) provided examples of real-life cases that reflected their assessment perspectives. The results indicated that too often workers’ assessments demonstrate an over-reliance on an authoritarian, deficit-based approach that does not sufficiently include family or child perspectives. Such an approach may suggest the lingering influence of philosophies that informed family policy during the Soviet occupation. Workers with advanced training in social work and strength-based practices were more likely to focus on family strengths, build collaborative relationships with parents and children, and report successful outcomes in their cases. This study underscores the potential influence of previous Soviet occupation on child welfare practices in Estonia and also the need for further training of the nation’s child protective workers.     

Emancipating play: dis/abled children,development and deconstruction

This paper reflects critically on the meaning of play, especially as it relates to disabled children and their experiences. We explore the close alliance of play to cognitive and social development, particularly in the case of psychologies of development, and reveal a dominant discourse of the disabled child as a non‐playing object that requires professional therapeutic intervention. We argue that this pathologisation of play on the part of disabled children is closely tied to normalisation of childhood, in which non‐normal bodies are increasingly expected to be governed and corrected not only by professionals but also by parents/carers. In order to rescue more enabling visions of the disabled child and their play we turn to three perspectives – the new sociology of childhood; social oppression theories of disability; critical developmental psychology. These resources, we suggest, allow us to reconfigure what we mean by play and disability in a contemporary climate that celebrates competition and marketisation over the intrinsic potentialities of all children. We argue that how we conceive play will per se undermine or promote forms of inclusive research, policy and practice.