FAMILIES’ CARE OF THEIR CHILDREN WITH SEVERE DISABILITIES IN AUSTRALIA

In Australia, from the 1980s, the processes of de-institutionalization and non-institutionalization have resulted in most children with severe disabilities being cared for at home. Current Australian government policy suggests that care increasingly will be undertaken in the home. The needs of families, then, is an area that requires attention. The findings in this paper are drawn from a series of qualitative in-depth interviews with parents of children with severe disabilities and, in particular, I highlight issues raised in relation to income, work, leisure and social relationships. Typically, despite the provision of formal (and informal) support services, participation in the wider community is limited. I argue that the provision of support services has been inadequate to enable engagement in activities that other families take for granted and that greater social policy attention is warranted.     

我国残疾儿童学前教育相关政策分析

残疾儿童学前教育需要相关政策提供支持与保障.本文采用政策文献计量法,对我国残疾儿童学前教育相关政策进行分析发现,相关政策数量持续增长,并受五年规划影响波动.在颁布主体上,教育部、民政部、财政部、残联形成核心合作关系,同时呈现多部门协作的特点.横向结构上综合政策以及特殊教育、康复政策多,普通教育(含学前教育)政策少;纵向结构上以规范性文件为主.政策内容中康教比重、参与主体、安置形式及资金支持方式不断变化,体现出日益重视教育的特点,以及政府主导、多主体参与的局面.相关政策发展历程体现出从缺陷补偿到全面发展的教育观变迁、从单一主体到多元主体的管理观变迁以及从即时补缺向制度性普惠的支持观变迁.最后,提出夯实政策基础、增强部门合作、教康合力推进等发展我国残疾儿童学前教育的建议.     

Local implementation of disability policies for “high incidence” disabilities at public schools in Japan and the U.S.

This study examines educators' responses to the local implementation of national special education policy changes for children with “high-incidence,” (mild cognitive and behavioral) disabilities. Sensitized by a sociocultural, developmental perspective, we examined Japanese and U.S. national educational policies for the support of children with high incidence disabilities and their implementation in local public schools. Twenty-six Japanese and 18 U.S. elementary school educators participated in individual interviews and discussed their experiences and perceptions of special education policies and their local implementation. Educators in both countries expressed common challenges, specifically, balancing legal requirements with everyday practices, adjusting to policy shifts, and negotiating support for children within and outside of their classrooms. Yet their experiences were culturally nuanced reflecting 1) relatively flexible (Japan) or fixed (U.S.) legal requirements, 2) shifts to more specialized (Japan) or more classroom-based (U.S.) support, and 3) established practices of classroom-based support (Japan) or pull-out support (U.S.). These cultural differences are examined in historical and sociocultural contexts, and implications are discussed for educators, social work practitioners, and policy makers in both Japan and the U.S.     

Quality of Life for Children and Adolescents with Developmental Disabilities: review of conceptual and methodological issues relevant to public policy

The construct of quality of life has great potential for guiding development and evaluation of policies for children with developmental disabilities. However, there are many different definitions and models of quality of life, and not all of them are equally appropriate for developing policies that would meaningfully address the needs of children with develop mental disabilities. Accordingly, the purpose of this article is to review major approaches to quality of life and discuss three models specific to children with respect to their relevance to public policy for children with developmental disabilities. Review of these models includes a discussion of quality of life definitions and conceptual issues, as well as analysis of major measurement characteristics of the instrument(s) associated with each model. Potential of each model for guiding development and evaluation of policy is also considered.     

Marginalisation processes in inclusive education in Norway: a longitudinal study of classroom participation

The aim of this paper is to describe the classroom participation of primary school children with disabilities who attend regular schools in Norway; to explore how relations between children with disabilities and their environment change, and further to chart how schools act in response to such change. The analyses are based on a life course study with data gathered from interviews and questionnaires given to the parents of children with disabilities born in the period between 1993 and 1995. The results show an increasing marginalisation of children with disabilities who receive their primary school education at regular schools. Despite the fact that public policies in Norway are based on a relational understanding of disability, thus suggesting that educators would make considerable efforts to accommodate children with disabilities in regular schools, the reality is that schools take an individual approach to children with disabilities which reflects a medical understanding of disability.     

Parity of participation in liberal welfare states: human rights,neoliberalism, disability and employment

Governments continue to face challenges in implementing effective strategies to increase social and economic participation of people with disabilities. In a recent OECD high-level policy forum on Sickness, Disability and Work, the main policy message was the need for a culture of inclusion; with a dual focus on short-term active policy interventions and long-term structural reform. This paper examines policies in liberal welfare states that encourage people receiving disability benefits to participate in the labor market. Examples from the United States, the United Kingdom and Australia of active labor market programs aimed at moving people with disabilities from workfare are analyzed in the context of international disability rights and neoliberal discourse. The paper explores the extent to which new approaches to activation policies are facilitating parity of participation and factors that impact the effectiveness of these policies.     

Involving People with Disabilities in Volunteer Roles

Abstract

According to the 2002 National Health Interview Survey, 33.7 million non-institutionalized Americans have limitations in usual activities. A recent poll on community participation found that, overall, people with disabilities have lower rates of community participation compared to those without disabilities. An analysis of that same poll concluded that people with disabilities continue to be treated as second class citizens by being excluded from the mainstream of everyday life. Social role valorization theory proposes creating and supporting socially valued roles for people who are kept at a social distance. It is through these valued social roles that they gain equal access to other opportunities that society has to offer. One such socially valued role is that of a community volunteer. Volunteer activities can foster a social environment where people with disabilities are seen as credible coping individuals. This paper reports the results of a survey of twenty-six community agencies which regularly use volunteers. The purpose of the survey was to identify barriers to volunteer opportunities for people with disabilities and to explore openness to methods to remove the barriers through community collaborations.     

Expanding our understanding of self-help support groups for substance use issues

Self-Help Support Groups (SHSGs) for substance use issues are recognized in current policies for their role in reducing substance use. However, these policies recognize only their therapeutic value. This article argues that SHSGs can offer more than therapeutic advantage. This contention follows a study involving young people who were involved in a 12 Step fellowship. They valued group involvement for the connectedness, support, and opportunities to learn. These findings have important policy implications, highlighting a need to broaden the scope of current policies so they reflect the array of potential benefit associated with SHSGs. For clinicians and practitioners who are guided by social policy, this would offer an enhanced understanding of these groups, given that they are in prime position to advise clients about available options.     

Supporting the Participation of Disabled Children and Young People in Decision‐making

Increasing children's and young people's participation in decisions, about their own care and about service development, is a policy priority. Although in general participation is increasing, disabled children are less likely to be involved than non‐disabled children and it is unclear to what extent children with complex needs or communication impairments are being included in participation activities. This article presents research exploring factors to support good practice in participation and discusses policy and practice implications.     

Children with disabilities in Swedish child welfare – a differentiating and disabling practice

ABSTRACT

Research shows that children with disabilities are victims of violence and abuse to a higher extent than other children and thus need support from social services. In Sweden, cooperation between two different social services units is required to support children with disabilities in socially vulnerable families. In this study, we have examined the intersection between children and disability in a Swedish social services context from the perspective of childhood studies and disability studies. The reasoning of the two units including the child perspective emerged during focus group interviews based on two vignettes. The results show two different rationalities, which has consequences for the disabled child. In spite of a social policy where the ‘best interests of the child’ are meant to prevail and disabilities are meant to be interpreted as barriers in society, children with disabilities seem to be reduced to individuals who are lacking in ability and competency and who are profoundly victimised by power structures that favour the adult perspective in social services.     

Disability discrimination in South Korea: routine and everyday aggressions toward disabled people

In the past, the type of discrimination against persons with disabilities in South Korea was seen mainly as being related to the physical environment and social systems that ignored disability. However, the emergence of social model and anti-discrimination laws established in numerous countries has rapidly expanded the scope of social participation for persons with disabilities as well as their awareness of their rights. This article posits that a type of disability discrimination that could emerge in the future is microaggression, which can appear in diverse forms in newly formed human relationships as the scope of social participation increases.     

Single Parenting in Families of Children with Disabilities

Rearing a child with disabilities is a challenge, per- haps even more so for single parents who most often are women. Stress and negative psychological effects have been considered likely outcomes for parents of children with disabilities. With the increased family focus in the provision of services for children with disabilities, it becomes even more important to understand the sources of stress and the types of adaptations made in these families. The research literature was analyzed and similar results were found. Single mothers of children with disabilities often were younger, had less education, and lower incomes. Few studies included these socio- economic factors. Findings indicate that gross differences betweensingle- and two-parent mothers tended to become nonsignificant when maternal education and income were taken into account. Stress levels and adaptation were not pervasively different for single mothers and mothers who were parenting with a partner, after SES variables were controlled. On a few dimensions-including family harmony, integration, and cohesion-some studies found mothers in single parent families to be at a slight disadvantage relative to two parent families. Research findings indicate that other factors need to be considered in research and in provision of services to understand the interplay between stress and adaptation and to facilitate the fami- lys coping. Further study is needed on factors on two levels; task demands and emotional responses, the diversity among mothers, their life situations, and their task demands must be recognized, and socioeconomic conditions and participation by other adults in care- giving. Positive adaptation by single mothers of children who have disabilities is a reasonable expectation; services should build upon family strengths and competencies.     

‘In a bind’: Foster mothers' experiences with welfare reform

The Personal Responsibility and Work Opportunity Reconciliation Act of 1996 has diminished government support to single mothers and further limits the options for full-time parenting, placing priority on work participation and reduction of welfare caseloads. Based upon interviews with 100 low-income foster mothers who are also Temporary Assistance for Needy Families (TANF) recipients, this study examines their experiences with these policies while they balance multiple responsibilities as caregivers for abused and neglected children from the child welfare system. The implications of TANF policies for foster mothers and policy alternatives that support diverse family structures are also discussed.     

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.     

Contrasting perspectives of parents and service providers on respite care in Queensland,Australia

Abstract

Parent-carers need support to continue to care for their child with significant disability in their home. There has, however, been little evidence that respite interventions have consistent or enduring beneficial effects on carer well-being. This article reports the findings of a qualitative study which adopted an Appreciative Inquiry philosophy to interview parent-carers of children with significant intellectual and/or developmental disabilities on how formal support services have helped them maintain their health and well-being, and disability support staff on how they help such parent-carers foster their health and well-being. We conclude that better communication and collaboration between service providers and users, more targeted training of workers, and embracing a person-centred and family-centred approach to respite services are needed. In addition, clearer definition and communication of the scope of respite services are required to best support families of children with significant disability in their home.     

Sexist talk: Gender categories,participants’ orientations and irony

This paper uses a discursive social psychological approach to develop and extend what we know about the constitution of sexist talk. Using data from a variety of sources where the topic under discussion is gender and leisure, I examine actual instances of sexism in action. Specifically, I examine the ways in which participants use arguments about possible injury to justify women’s non–participation in certain sport and leisure activities. I identify three resources that participants use to sustain sexist accounts, and bolster their arguments against attack. A fourth resource problematises just what counts as sexist talk, and provides evidence for the ways in which participants themselves can exploit sexist arguments in an ironic fashion to expose and challenge sexist assumptions. I end by considering the implications of this approach for future work on sexist talk, and discursive work on the relationship between gender and language more generally.     

Fathers on parental leave: an analysis of rights and take-up in 29 countries

Using information published in 2014 annual review of the International Network on Leave Policies and Research, the article analyses parental leave and benefit policies in 29 countries to identify which characteristics can potentially facilitate fathers’ take-up of parental leave. The scarce statistics that is available shows that only few countries have been successful in increasing fathers’ participation in the parental leaves, despite the fact that some recent policy schemes seem to have drawn lessons from the Nordic success. There are several countries which indeed have adopted principles similar to the Nordic countries in their leave schemes, such as fathers’ quota, generous income-related benefit or long duration of the leave. The evidence suggests that only taking over some elements of the successful policy schemes does not necessarily lead to a change in the leave-taking behaviour of fathers and families. The evidence shows reasonably high take-up of parental leave only in countries where there is a combination of fathers’ quota and high level of benefit. There is still no evidence to confirm that replicating the fathers’ quota in its Nordic designs other societies would generate similar behavioural change as it did in the Nordic countries.     

Community participation and inclusion: people with disabilities defining their place

Disability‐related public policy currently emphasises reducing the number of people experiencing exclusion from the spaces of the social and economic majority as being the pre‐eminent indicator of inclusion. Twenty‐eight adult, New Zealand vocational service users collaborated in a participatory action research project to develop shared understandings of community participation. Analysis of their narratives suggests that spatial indices of inclusion are quiet in potentially oppressive ways about the ways mainstream settings can be experienced by people with disabilities and quiet too about the alternative, less well sanctioned communities to which people with disabilities have always belonged. Participants identified five key attributes of place as important qualitative antecedents to a sense of community belonging. The potential of these attributes and other self‐authored approaches to inclusion are explored as ways that people with disabilities can support the policy objective of effecting a transformation from disabling to inclusive communities.     

Comparison of specialist and mainstream programs for older carers of adults with intellectual disability: Considerations for service development

Older carers of adults with intellectual disabilities experience unique challenges. Outreach initiatives identify a high number who are unknown to support services and a case is made to proactively engage them to assist in future planning for their adult children. An earlier study by the authors suggested that, in Victoria, specialist case management programs for older carers occupied a unique place within the service system. The present paper discusses a study that further explored the functions of specialist programs for this group through a comparsion with a mainstream disability case-management program. Few differences were found, although mainstream programs did not undertake outreach and community education functions. Models that build on the capacity of mainstream case management or carer support programs to work with older carers and target outreach more effectively are discussed.     

Women who sacrifice themselves for everybody: qualitative research with mothers of disabled children

This study, from a feminist perspective, aimed at examining the experiences of women whose children with cerebral palsy received a treatment at a physiotherapy and rehabilitation center located in Ankara, Turkey. The study intended to reveal the perceptions of in-family roles of women with disabled children, their participation in public life, and their self-concept within the scope of feminist social work. Thus, the objective of the present study was to contribute to the understanding of the fact that non gender-blind services should be developed in this field on the basis of social justice and human rights, which constitutes the fundamental philosophy of social work. Qualitative research method was employed in the study where data were analyzed through content analysis. The findings of the study were interpreted under four main themes: the lives of the women with disabled children after their disabled children were born; being a woman within the scope of family life, participation in decision-making processes, and domestic division of labor; participation in public life and relations with women's associations; the self-sacrifice; and the suggestions of women concerning self-realization within the scope of self-concept.