Dads care too! Participation in paid employment and experiences of workplace flexibility for Australian fathers caring for children and young adults with disabilities

This study uses Australian survey data to explore whether caring for children and young people with disabilities affects paid employment participation of fathers who identify as the secondary caregiver. More fathers in the study were in full-time employment than those in the general Australian population, but they worked fewer hours, often in jobs they did not enjoy or roles with less responsibility. Over one third of fathers reported that caring had impacted on their job opportunities or career progression, particularly those whose children had more severe disabilities. The financial costs of raising a child with disabilities and their caring obligations informed many of the decisions fathers made in relation to employment. Fixed hours of work, lack of understanding from their employer, an income tied to hours worked and staff resources were cited as reasons why almost half of the fathers felt they were unable to access flexible working conditions to assist with their child’s care. Self-employment was seen by many fathers as desirable, but the perceived increase in flexibility may be accompanied by an increase in work hours. Implications for paternal well-being are discussed, along with the lifelong implications of caring on employment and financial security for families in the Australian context.     

Managing turning points and transitions in childhood and parenthood – insights from families with disabled children in Norway

This article explores turning points and transitions emerging in the life course of children with disabilities and their parents. Through in‐depth interviews with parents we found that a change appears in disabled children’s social participation and belonging, at approximately eight years of age for children with learning difficulties and at approximately ten years of age for children with mobility difficulties. Most of the parents experienced a ‘turning point’ that directed them into either marginal or inclusive positions in adulthood. The ‘transition’ emerges at a time described as a stable period of life for families in general and illustrates parents’ experiences of the importance of both ‘doing’ and ‘being’ in parenthood and childhood. Parents’ experiences are strongly interwoven with the child’s life and access or lack of access to services and relational responses.     

Agency and its Constraints among Biological Children of Foster Carers

There is currently limited understanding of biological children of foster carers and their experiences of foster care placements. This article presents findings from focus groups with biological children that shed light on their perspectives and experiences. Findings indicate biological children are competent social actors who contribute to, and seek to influence, the care environment in their homes. However, due to a lack of recognition, information, and support, biological children’s agency is constrained and their challenges exacerbated. This article argues for increased recognition, information and support for biological children, advocating for a “whole-of-family” approach to foster care practice and policy.     

Can't hear or won't hear? — the evidential experience of children with disabilities

Twin brothers aged 12 attended a special needs boarding school which had provision for children with emotional disturbances and other disabilities. While they were at home during the holidays, their mother overheard a conversation between them which led her to suspect abuse. She asked them several questions and decided to contact the police. An investigation began which also included interviewing several other boys, some of whom had been removed from the twins' school and were attending a school elsewhere. The evidence obtained from a number of the boys was considered to be strong enough for the Crown Prosecution Service to take the case forward. Almost a year after the mother's initial referral the committal hearing took place. Lobbying from a local voluntary organization resulted in screens being used in the courtroom which would otherwise not have been provided. The case was heard and transferred to the Crown Court for trial. The magistrate in the committal hearing made clear recommendations that the children's disabilities and the delay there had already been in bringing the case to court should determine that the subsequent trial needed to take place as soon as possible. However, more delays ensued and the final date was established almost a year later. The children each spent between 2 and 6 hours in the witness-box. The defence counsel frequently focused on their disabilities in questioning the validity of their evidence. The twins were expecting to give evidence by video-link, but the delays meant they were considered too old to be ‘vulnerable’ witnesses and had to speak in open court. The first twin's evidence was not completed in one day and the mother was told that she could not talk to either of them about the case, nor could they stay together that night. She was told that she had to choose which of her distressed sons to take home and that she had to make alternative arrangements for the other child. She was given no support in making the decision. In addition to this distress, during the day she had witnessed the defence counsel's attitude to her son, who had severe hearing difficulties. The defence counsel had laughed at the child's difficulty in hearing and said, ‘Can't hear or is it that you don't want to answer?’ One of the other children was humiliated by the defence counsel saying, ‘Who would want a smelly, shitty boy on their lap, no-one hugs smelly, shitty boys like you?’. The child was giving evidence on video-link and became so upset he was ‘switched off’ so that he was no longer visible to the court. Another child had epilepsy and counsel argued that he could not put questions to the child in case the child had a fit. In addition, an ‘expert’ witness who had seen some of the children 5 years previously stated categorically that ‘these children are born liars’. The outcome of this trial was that the headmaster was found guilty on several counts and received an 18-month prison sentence.     

Voices from Vietnam: experiences of children and youth with disabilities,and their families,from an Agent Orange affected rural region

This study examines the experiences of young people with disabilities from ethnic minorities, and their families, in central Vietnam. The study is set in an area contaminated by Agent Orange during the Vietnam War. Data were gathered from interviews with youth with disabilities and interviews and focus groups with mothers who had children with disabilities. Respondents expressed confronting multiple barriers to inclusion, education, health and well-being similar to other persons with disabilities and their families from around the world. Participants sought broad-ranging human rights as they described experiencing stigmatization and marginalization from negative social reaction toward disabilities and by residing in a location known for dioxin contamination. The participants’ voices are not only important in informing program responses to support implementation of Vietnam’s new National Law on Persons with Disabilities, but also timely as the US government considers proposed legislation providing material support for Vietnamese nationals affected by Agent Orange.     

Characterizing the systems of support for families of children with disabilities: A review of the literature

ABSTRACT

During early childhood, children require major support that is tailored toward their specific needs. For children with disabilities, families play a crucial part in providing the needed services. However, families often lack the knowledge, resources, and skills that would help them in overcoming challenges that arise while raising a child with disability. Although much research has focused on defining the needs of families with children with disabilities and the impact of disability on the family system, many questions remain. A comprehensive perspective is needed to identify the types of support families provide to the child with a disability, the impact of providing that support on family members, the support systems that are available to families, and the impact of support on society. This review consolidates the empirical research to date on family support during early childhood and outlines areas of research that need further exploration.     

Intergenerational transfers in long term care

How are parental inter-vivos transfers to their children and children’s informal care of parents influenced by personal characteristics, family conditions and state specific long term care policies? AHEAD data from 1993 and 1995 and a two-party choice model are used to guide the estimation of OLS and binary logit models of the amount and likelihood of inter-vivos transfers to children and informal care of parents. Results suggest that both parents’ characteristics and their offspring’s characteristics affect parental gifts to children and children’s time assistance to their parents, highlighting the interdependent nature of these decisions. Furthermore, though state policies did not consistently affect parental gift giving, the availability of state respite care support -short-term “breaks” for informal family caregivers- (1 % significance level) and adult day care centers (5 % significance level) were positively related to the amount and likelihood of children’s time assistance to their parents. These findings highlight the importance of some state programs such as respite care support in encouraging intra-family support for the elderly. Support for programs that reduce the caregiving burden may encourage more children to care for their elderly parents.     

Residential care for children with intellectual disabilities in the social protection system in Serbia

This paper presents and discusses the characteristics of the social protection of children with intellectual disabilities who are placed in children's homes in Serbia. It draws on a survey that covered the entire population—586 users in all five institutions for children with intellectual disabilities who resided there in 2009. The analysis shows the heterogeneity of users in relation to age and degree of intellectual disability, their long-term stay in homes, the inadequate structural and functional standards, and insufficient health care. Residential care becomes the most common form of permanent rather than temporary care. These findings suggest the need for a number of strategies to be adopted, and the paper concludes by outlining potential ways forward.     

Child care subsidies and care arrangements of low-income parents

While enrollment into early education programs has increased significantly in the past two decades, many low-income children still do not attend these programs due to lack of funding and access. This study uses data from the 2005 National Household Education Survey to examine the effects of child care subsidies on the enrollment of low-income children in early childhood education programs. Multinomial regression results show that families that receive child care subsidies are more likely to place their child in center-based preschool programs. The analyses also show that subsidy receipt increases the probability of using center care for low-income households. These findings indicate that policies aimed at increasing funding and availability of early education for low-income families can help close the gap in enrollment.     

Hidden contradictions and conditionality: conceptualisations of inclusive education in international human rights law

The nature of education that children with disabilities should receive has been subject to much debate. This article critically assesses the ways in which the international human rights framework has conceptualised ‘inclusive education’. It argues that the right to education for children with disabilities in international law is constitutive of hidden contradictions and conditionality. This is most evident with respect to conceptualisations of ‘inclusion’ and ‘support’, and their respective emphases upon the extent of individual impairment or ‘deficit’ rather than upon the extent of institutional or structural deficit. It is vital that the new Committee on the Rights of Persons with Disabilities pays close attention to the utilisation of these concepts lest the Convention on the Rights of Persons with Disabilities further legitimises the ‘special needs’ educational discourse to which children with disabilities have been subject.     

Motives for sharing illness experiences on Twitter: conversations of parents with children diagnosed with cancer

A patient- and family-centred approach in paediatric health care is important because parents are involved in making key decisions about their child’s health care and advocating for the best interest of the child. Parents and family members are increasingly turning to the internet to find and actively share information about their child’s health care. Twitter is one of many online platforms used by parents of children diagnosed with cancer to share information related to their child’s cancer experience. Existing research suggests that there is a need to better understand the motives for using Twitter for sharing content about a child’s cancer experience. Furthermore, there is a lack of theoretical frameworks for characterizing those motives. In this paper, we identify key themes of tweets posted by parents of children diagnosed with cancer and align those themes with motives inspired by the well-studied Everyday Life Information Seeking framework. We propose a new motive in addition to those associated with the framework and suggest that information can be shared for endogenous reasons as well as to meet the needs of others. This paper contributes an increased understanding of motives for sharing information about a child’s cancer journey and extends a theoretical framework for building further knowledge in this area.     

Cultural sensitivity in the delivery of disability services to children: A case study of Japanese education and socialization

This ethnographic study examined beliefs about disability and related socialization and educational practices at a Japanese elementary school. Disability is a universal issue affecting child welfare and educational systems around the world. Yet, relatively little sociocultural research has focused on non-Western children with disabilities. This limitation restricts our understanding of the extent to which and how cultures vary in their responses to disability, and the impact of these variations on children's development. Public schools in Japan recently implemented formal special education services for children with “developmental disabilities,” a new category used by educators to refer to “milder” difficulties in children's acquisition of social and academic skills, for example, learning disabilities, ADHD and Asperger's syndrome. This transition created a dilemma for educators: blending new requirements of providing individualized support with traditional Japanese socialization and educational practices of raising and educating children within peer groups. Participant observation, in-depth interviews, and longitudinal case studies of children with developmental disabilities addressed culturally- and developmentally-sensitive practices employed by educators. Educators were sensitive to stigma, involved peers in supporting one another, created home-like classrooms, guided children towards voluntary cooperation, and provided support and guidance to parents. Broad implications for the design of culturally-sensitive disability services are discussed.     

The education of children and adolescents in out-of-home care: a problem or an opportunity? Results of a longitudinal study

The education of children in care is an issue that often falls into a no man’s land in which responsibility always seems to be attributed to the other ‘department’. Furthermore, all too often, teachers, educators and foster parents find themselves working with these children with no support, as if they were isolated cases. The aim of this study is to get to know the school situation of children in different types of out-of-home care: residential, kinship and non-kinship care. Systematic data on the school situation of 11–16-year-olds (on class attendance, school behaviour, academic results and guidance towards post-compulsory education) were gathered over a period of 5 consecutive school years. A 3-year longitudinal study on the same items (N?=?391) was made and time-series data were gathered for 5 years (N?=?1841). Results show that the in-care population is at a clear disadvantage and inequality of opportunities compared to the general population in relation to their educational pathways and outcomes; the most disadvantaged being the population in residential care. Recommendations are included, posing the challenge that what has to date been considered a ‘problem’ should become an opportunity for these children.     

Prevalence and economic well-being of families raising multiple children with disabilities

This study estimates the prevalence of households raising more than one child with disabilities, and examines these families' economic well-being. Using pooled data from the 2004 and 2008 Survey of Income and Program Participation we compare households with multiple children with disabilities (n = 932) to households with one disable child (n = 3457) and to households with at least one child but none with disabilities (n = 21,378) on measures of material hardship. Three percent of U.S. households with children had more than one disabled child. Compared to other households with children, those with multiple children with disabilities were significantly more likely to have income below the federal poverty level and to report material hardships. The number of children with disabilities is an important contextual variable for studying the economic circumstances under which, care is provided to children with disabilities. Its implications for practice and policy are discussed.     

Post-adoption needs of families adopting children with developmental disabilities

The post-adoption service use and needs of 125 families who had adopted children with developmental disabilities were examined using a structured mail questionnaire. Although satisfaction with services used was generally high, many families did not have access to basic family support services such as respite care, life planning and support groups. Income was the only demographic variable which correlated with service need. Middle income families (mean = $30,000 to $34,999) were more likely to need support groups and babysitting for other children than either lower or higher income groups. Of particular note in this study is the relatively high incidence of transracial adoptions. Thirty-one percent of the sample had adopted children of a different race than the family. The implications of the findings and service recommendations are discussed.     

Care for vulnerable and disadvantaged children in the Czech Republic

The problematic issue of care for vulnerable and disadvantaged children in the Czech Republic, highlighted in this article, stems from the large number of children in institutional care. Workers from the Department for Social and Legal Child Protection (OSPOD) may get involved if there are factors in the family jeopardising the child's healthy development that cannot be improved, and institutional care may be recommended. This article discusses factors that influence and many times complicate the worker's job and are often the reason for an adversely high number of children living without a family. Attempts to reunite children with their biological families are complicated by the fact that the family situation rarely improves. Therefore children returning to live with their own families face the same conditions they were previously removed from. A more positive option for some children placed in institutional care is adoption or long-term foster care. However, many children continue to spend their whole childhood in a care home. The authors describe the care system in the Czech Republic and point out its weaknesses and some controversial facts. They also discuss and evaluate the ‘National Action Plan’, a government policy document, which articulates aspirations and obligations for all government departments and organisations involved in the Czech childcare system.     

Minority parents’ coping efforts to improve their children’s academic achievement: the Tanodas in Hungary

ABSTRACT

Our paper is based on a study carried out among students of Hungarian tanodas – second chance educational institutions in Hungary – and their parents. The findings of the interview research did not support deficit models and suggest that schooling is a vital issue for both Roma/Gypsy families and their children. All families have limited resources and opportunities to achieve desired goals, and despite their strong intent and determination, they often seem to lack a clear vision of the steps to be taken. Our results show that children have to cope with negligence, stigmatization, exclusion, discrimination, etc. Turning to tanodas for help has become a sort of coping strategy in and of itself. We could identify, as common parental strategies, the ‘squeezing out’ of the maximum available scarce opportunities, building on social networks, and monitoring their children’s studies. Students’ coping mechanisms regarding identity-threats were more varied and ranged from confrontation via proxy control and social support, to disengaging from school and taking on a negative identity or, the opposite, taking up positive roles.     

Socioemotional characteristics of minors in foster care: A comparison between the estimation of parents,teachers and children

During the child's first few years, it's of fundamental importance the presence of a strong emotional base as long as it creates the possibility to open themselves to physical and social world with confidence, and as it acts as a facilitator of cognitive development. For this reason, if the family cannot ensure such base, social services are forced to resort to foster care, a resource that has a lot of difficulties, leading to different implications in the development of the child and of the foster family. It is therefore important to analyze in depth the socio-emotional variables that characterize children who are in a situation of foster care in order to provide adequate assistance to optimize their development. For this 32 minors in foster care, 31 foster parents and 28 teachers from the city of Valencia, were administered the BASC. The results highlight that parents are evaluating children, in general, worse than tutors. Specifically they consider children more aggressive, they detect more behavioral and attention problems and recognize in them a greater tendency to externalize the problems, while the teachers consider these children as with more social and adaptive skills. There were no significant differences between the scores of parents, teachers and children. High levels of psychopathology (which are clinically significant in various cases) and the fact that host parents evaluate minors as more problematic, are indicators of parents' and minors' need of support from public organizations.     

Time for justice: safeguarding the rights of disabled children

This article reviews two core strategies for safeguarding the rights of disabled children and examines the extent to which these processes advance justice for children in accessing an inclusive and equitable education. The article evaluates the adequacy of the legal system in the face of increased evidence of exclusionary practices of schools, and the low uptake of the disability tribunal as a vehicle for redressing discriminatory practices. It reviews the work undertaken with schools to develop procedures and processes to support them in identifying disabled pupils in order to monitor the impact of their policies and practices. Although there were some limitations, this work provided a platform from which to ensure that schools engaged with their responsibilities and understood more about the ways in which a child’s impairment impacted on their participation in school life. Instead we are dependent on the work of voluntary associations to safeguard children’s rights.     

Sensitive topics in social research involving children

While there is broad consensus that involving children in research is critically important for understanding their lives, there is considerable caution around their participation in social research on ‘sensitive’ issues. Such caution is further amplified by a lack of agreement about what constitutes a ‘sensitive topic’. This article draws on data from interviews with a range of Australian stakeholders, including children, parents, researchers, ethics committee members, government and non-government organisation representatives, and other decision-makers, specifically related to the question of ‘what is a sensitive topic?’. While participants identified a range of sensitive topics, findings point to sensitivities being closely linked with the contexts of children’s lives and experiences. This requires researchers to approach research in ways that reflect more nuanced understandings of these sensitivities, help address potential concerns and facilitate the development of research relationships that promote ethical conduct of research with children.