Non‐take up of the supplemental child benefit for children with a disability in Belgium: A mixed‐method approach

Families with disabled children run a great risk of being poor. Although policies providing poor families with financial benefits should be effective in reducing poverty, the actual effectiveness is often jeopardized by the issue of non‐take up (NTU). Yet, NTU of benefits aimed at disabled children is for the most part uncharted territory. In this article, we fill this gap using a mixed‐methods approach to (a) estimate the magnitude and characteristics of NTU in the Belgian “supplemental child benefit” by drawing on a large‐scale administrative dataset on childhood disabilities and (b) explore the determinants of NTU by means of semistructured interviews with experts and parents. We estimate an NTU rate of at least 10%, a substantial figure given that the benefit is not income tested. This mainly concerns children with “less visible disabilities” (autism spectrum disorder and other intellectual and psychological disorders) and results from insufficient information provision about the benefit's existence and eligibility criteria; process costs, for instance, the complexity of the procedure; and the way the scale to assess a child's disability is constructed.     

“Power together”: Professionals and parents of children with disabilities creating productive partnerships

Disparity of power and authority in the relationship between parents and professionals has been shown to be a major challenge in creating a successful partnership in caring for children with disability. The goal of this article was to evaluate workshops attended by professionals and parents of children with disability by raising awareness to barriers related to incompatible expectations and role definitions. The research explored the experiences of the participants in order to identify factors that facilitated or impeded their collaborations. Data were collected from three workshops attended by 22 mothers of children with disability and 24 professionals (most of them are social workers). This qualitative research used interpretative phenomenological analysis to investigate the participants' experiences. Findings showed that parents and professionals joined forces to create a productive working relationship by taking advantage of power over and power together relationships. This mutual process required participants to be aware, empathic, and respectful of one another's needs and limitations; acknowledge the contribution of experiential and professional knowledge; and co‐operate in overcoming the effects of ineffective bureaucratic service systems. Interventions geared to contain emotional burden, acknowledge differential knowledge and experience, and structure the use of power are suggested.     

Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia

ABSTRACT

This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the “diagnostic phase,” (2) the “explorative phase,” (3) the “adaptive phase,” and (4) the “closure phase.” The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy.     

Experiences of National Disability Insurance Scheme planning from the perspective of adults with intellectual disability

The Australian National Disability Insurance Scheme (NDIS) is attempting to address long‐term inequalities experienced by people with disability. Planning is central to the NDIS. People with intellectual disability will be the largest group of NDIS participants, and their perspectives are underrepresented in the literature. It is important to understand how they experience and perceive NDIS planning. Ten adults with intellectual disability participated in semi‐structured interviews to explore their experiences of NDIS planning. Data were analysed using Braun and Clarke's (2006, Qualitative Research in Psychology, 3, 77) six stages of thematic analysis. Six themes were identified: planning preparation not fit for purpose, creating goals, goals not met, planning not meeting real needs, lack of choice and control and importance of relationship with planner. In principle, the NDIS presents a real opportunity to increase the choice and control, social and economic participation, and independence of people with disability; however, this does not always translate into practice for people with intellectual disability.     

Models of disability support governance: a framework for assessing and reforming social policy

In many developed countries, the provision of disability services has undergone significant transformations, from institutional to community based care, and from oganisational to personalised funding. Yet delivering disability support remains an ongoing challenge for governments. Specifically, the relative success of different types of disability support governance is convoluted and problematic given the diversity and complexity of disability support systems and the people they serve. To enhance the systematic analysis and evaluation of disability support governance, this paper conceptually advances four distinct models based on the locus of control and coordination of such support: uncoordinated; casework governance; dwelling‐based governance; and user‐coordinated. Using illustrations from case studies of individuals receiving care, the identification of these ideal types enables their relative strengths, weaknesses, and the occasions of governance failure to be articulated. No one model is universally applicable to people, nor immune to failure. Furthermore, the paper presents a novel approach to visualising actual disability support arrangements as social networks. The utility of such visualisations for analysing individual and system‐ wide arrangements is outlined. In the context of Australia's developing National Disability Insurance Scheme, these conceptual and analytical developments are argued to be important tools for policy and service analysis and reform.     

What is a person‐centred approach? Familiarity and understanding of individualised funding amongst carers in New South Wales

Person‐centred approaches place individuals with a disability at the centre of decision making, with their carers and family invited to be partners in the process. Rather than being required to fit within existing service programs, person‐centred approaches enable individuals to choose the support options that best meet their needs. In order to facilitate this, person‐centred approaches will be accompanied by the introduction of individualised funding. This means the individual will be provided with funding to purchase services of their choosing. Given these significant changes occurring in the disability sector, Carers NSW surveyed informal carers of people with a disability to identify what they knew about person‐centred approaches and how they felt about their introduction. Survey results indicate that there is a need to increase the capacity and willingness of carers significantly in order to engage with person‐centred approaches and individualised funding. Carers require targeted and comprehensive information about these concepts in order to understand fully the changes occurring within the disability sector. These findings also indicate specific areas that need to be addressed in order to increase carers' awareness of these concepts and also to address existing negativity and confusion.     

Allocating Homes for People with Intellectual Disability: Needs,Mix and Choice

Allocation of housing and support services for people with intellectual disability is based on three major sets of criteria: an assessment of the applicants' needs; considerations of social mix; and the applicants' own choices. This article examines the philosophical and institutional rationales underlying each of these notions and the tensions arising when seeking to achieve a balance between them. The first section of the article is based on a review of related studies in the UK, the USA and Australia, mainly on allocation policies in mainstream social housing. The second section presents original empirical work carried out in the state of Victoria, Australia, in 2007–08, illustrating some of the implications of a new balance that was created between needs, mix and choice in allocation of housing and support for people with intellectual disability. The article argues that the concepts of needs, mix and choice should be redefined in a way which reflects the interdependencies between them. Further, the article calls for more extensive mutual learning between studies of mainstream social housing and housing for people with intellectual disability.     

Exposure to interpersonal racism and avoidance behaviours reported by Aboriginal and Torres Strait Islander people with a disability

Using the National Aboriginal and Torres Strait Islander Social Survey, this paper examines exposure to interpersonal racism and avoidance reported by Aboriginal and Torres Strait Islander people with disabilities. We find that in 2014–2015, 32 per cent of people aged 15–64 without a disability experienced racism compared with 42 per cent of those with a disability. Half of those living with an intellectual or psychological disability reported racism, and about 20 per cent of those with any disability avoided settings such as healthcare, education or the general public due to past instances of racism, relative to 11 per cent of those without a disability. After adjusting for confounding factors and complex survey design, presence of a disability was associated with a 1.6–1.8 odds increase in exposure to racism, more frequent racist exposure and avoidance. Disability was further associated with an approximate doubling of the odds of reporting multi-context avoidance and the likelihood of reporting both racism and avoidance in tandem. Severity of disability, higher numbers of disabling conditions and specific disability types were associated with increased odds of racism and avoidance. Independent of these effects, removal from one's natural family and identifying with homelands was strongly associated with racism and avoidance.     

Assessment of hostile and benign intent attributions in early childhood: Can we elicit meaningful information?

Throughout middle childhood and adolescence, hostile intent attributions fairly consistently predict levels of aggression. Across 28 published studies in early childhood, however, researchers have found less consistent relationships. We believe this may be due to a majority of these studies using an inappropriate methodological approach for early childhood, forced‐choice questioning. We tested the use of open‐ended vs. forced‐choice questions about intent in 118 Head Start preschool children. In response to a forced choice question, only about 30% of children attributed intent correctly to a video depicting clearly purposeful behavior. And across 18 video vignettes depicting ambiguous provocation, children's intent attribution scores based on a forced‐choice approach demonstrated neither reliability nor validity. Conversely, children's intent attribution scores in response to open‐ended questions demonstrated reliability, correspondence with other aspects of social information processing, and predictive validity in the form of relations to teacher reports of social competence and aggression. Researchers should refrain from utilizing forced‐choice approaches to intent attributions in early childhood unless also conducting intent understanding checks.     

‘More time for what?’ Exploring intersecting notions of gender,work, age and leisure time among people with cognitive disabilities

This article explores intersecting notions of leisure among middle‐aged people with intellectual disabilities in the setting of the Swedish welfare state. The participants are recipients of long‐term disability services and have experienced the changing ideological frameworks of the welfare effort, which has recently focused on normalisation, inclusion and participation. Structured activities are arranged by disability services in order to normalise living conditions and provide recreation for disabled people. However, the range of activities is constrained by financial resources, by notions of gender and age and by an institutionalised emphasis on the work ethic – leading to constructions of leisure partly as ‘time beside’ where ‘free time’ activities should not interfere with the duties of the working week. The participants' limited resources and their lack of a strong voice limit their ability to demand their legal rights and leave many of them with ‘too much time with too little to do’. Key Practitioner Message: ● A common idea of leisure is the relationship between social and physical activities, well‐being and health; ● People with disabilities, regardless of age, engage in fewer leisure activities than the general population due to a lack of resources; ● Even with legal rights, the lack of a strong voice as well as institutional constraints limit their leisure opportunities.     

Barriers to finding and maintaining open employment for people with intellectual disability in Australia

Everyone has the right to employment. Work is important for health, well-being, and social, economic, and financial inclusion. However, it is often difficult for people with intellectual disability to find and maintain work, especially in the open labour market. Policy challenges remain about who can access open employment (also sometimes called competitive or supported employment) and how often people with intellectual disability do so. Greater understanding about the barriers that people with intellectual disability encounter when they try to find and keep work in open employment is needed. Drawing on research with 51 people with intellectual disability in Australia, this paper examines the systemic barriers they report to finding and maintaining work in open employment. The findings highlight that the barriers they experience stem from narrow, dismissive, and discouraging attitudes to their work in open employment and from a spectrum of experiences of stigma and discrimination in open workplaces. The paper thus provides new knowledge about reasons that people with intellectual disability may either reject or not continue in open employment and take up less inclusive work options. The paper discusses the implications of the findings, including the need for policy development for attitudinal change, designing more varied roles for employees with intellectual disability, ensuring access to industrial relations protections, and increasing and better regulating and funding requirements on support to people with intellectual disability who are seeking work in open employment.     

Pathways between Parent–Child Interactions and Peer Acceptance: The Role of Children's Social Information Processing

This study examined the links among parents' interaction styles, their children's social information processing, and peer acceptance. Fourth‐grade children (N = 159) and their parents were observed during family discussions. One year later peer acceptance and children's information processing choices (goals, strategies, and attributions) in response to social dilemmas involving their parents and peers were assessed. Fathers' interaction styles with their children predicted both girls' and boys' information processing in regard to their fathers and peers, which, in turn, were related to peer acceptance. Mothers' interactive styles with their children predicted children's social information processing in regard to parents and peers and peer acceptance in similar ways, but only for girls. This study provided evidence that parent–child interaction is linked to children's information processing concerning their relationships with parents and peers and in turn with children being liked by peers. The implications of a social information processing approach for understanding family–peer links are emphasized.     

Predicting Future Commitment to Care for Frail Parents Among Employed Caregivers

A study of 133 full time employees with parent care responsibilities investigated various factors that could reduce this group's future caregiving commitment to aging parents. Study factors included: caregiver attributes, level of caregiving involvement, job stress, tensions between the caregiver and the dependent parent, caregiver's level of physical and mental strain, and limited support from family and friends. The relationship between the caregiver and the parent was the best predictor of sustained commitment to caregiving. One aspect of the employees' work experience made a small, but important contribution to respondents' future care plans. Those employees who frequently adjusted their work schedule and routine to accommodate parent care demands were less likely to sustain their caregiving commitment. Reasons for these findings are explored and implications for social policy and clinical practice are discussed.     

Shaping attitudes to disability employment with a national disability insurance scheme

Approximately twenty per cent of the world's population has some form of disability, but workforce participation of people with disability has been intractably low. In an effort to improve the economic and social participation of people with disability, the Australian Government introduced legislation in 2013 designed to provide individualised support and encourage communities and employers to be more receptive to people with disability. The authors surveyed 1,230 workforce members and 715 employer decision‐makers at three points in time (2010, 2012, and 2014) to examine how attitudes to people with disability and employer hiring behaviour are changing in response to the legislation. The evidence demonstrated that both groups are experiencing greater contact with people with disability, reporting more positive interactions with people with disability, and endorsing more reasons for employers hiring people with disability. However, these positive attitudes have not been accompanied by improvements in hiring: there was a decline in decision‐makers' hiring of people with disability from 2012 to 2014.     

Government perspectives on housing,technology and support design within Australia's National Disability Strategy

Australia's National Disability Insurance Scheme (NDIS) is a significant disability reform and part of a 10‐year National Disability Strategy that aims to build well‐being and inclusion of Australians with disability. Housing is recognised as a key determinant of health. Transition of state‐funded supported accommodation to an NDIS, within the new Specialist Disability Accommodation framework, aims to deliver housing responses that positively influence NDIS participant outcomes. This study aimed to gather perspectives of government disability and housing representatives on current opportunities and issues for Australians with disability. The study investigated four key research questions, relating to built design; integrated technologies; the relationship between housing and support provision; and community precinct design. Nineteen government representatives from seven of the eight Australian states and territories participated in a roundtable focus group in Melbourne, Australia (March 2017). Focus group data were audiotaped, transcribed verbatim and thematically analysed. Twelve themes were identified in response to the research questions identified. Key policy and practice implications were highlighted. This research offers insights from government that can contribute to strategic housing, technology, support and community design decisions and Australia's National Disability Strategy, to deliver improved outcomes for people with disability.     

Employment status transitions among young adults,with and without disability

Employment is a crucial avenue through which young people with disability can experience material wellbeing and social participation. While the low employment rates of young people with disability are well established, little is known about the stability of employment status – that is, the degree to which individuals remain in or move in and out of employment. This article uses longitudinal data from a large Australian national data set to investigate the transitions between full‐time, part‐time and non‐employment for young people with and without disability. Considerable mobility was found between employment states for both young people with and without disability, with young people with disability more likely than their peers without disability to transition to reduced levels of employment and less likely to transition to increased levels of employment. Social background and contextual factors predicted employment for young people with disability; however, disability represented an additional penalty even after taking these factors into account. Findings suggest a need for social policy targeted specifically towards the barriers to maintaining and increasing employment experienced by young people with disability.     

Delivering decision making support to people with cognitive disability — What has been learned from pilot programs in Australia from 2010 to 2015

The UNCRPD has generated debate about supported decision making as a way to better enable people with cognitive disability to participate in decision making. In Australia, between 2010–2015, a series of projects have piloted various models of delivering decision making support. A critical review was conducted on the program documents and evaluations of these pilot projects. The pilots were small scale, conducted by both statutory and non‐statutory bodies, and adopted similar designs centred on supporting a decision maker/supporter dyad. Primarily, participants were people with mild intellectual disability. Themes included: positive outcomes; uncertain boundaries of decision support; difficulty securing supporters; positive value of program staff and support to supporters; limited experience and low expectations; and varying value of written resources. The lack of depth and rigour of evaluations mean firm conclusions cannot be reached about program logics, costs or outcomes of the pilots. The pilots demonstrate feasibility of providing support for decision making rather than resolving issues involved in delivering support. They suggest that some form of authority may facilitate the role of decision supporters, help to engage others in a person's life, and integrate decision making support across all life domains.     

Early socialization of hostile attribution bias: The roles of parental attributions,parental discipline,and child attributes

The goal of this study was to examine child and parent predictors of children's hostile attribution bias (HAB) with a particular focus on exploring the associations between parents’ early attribution of child misbehavior and children's HAB in the transition to school age. Participants were 241 children (118 girls) of middle‐income families who were at risk for school‐age conduct problems. Multi‐method, multi‐informant data were collected on maternal attributions of child misbehavior, parental use of corporal punishment, and child attributes (i.e., verbal IQ, effortful control, theory of mind, and emotional understanding) at 3 years, and child HAB in ambiguous situations at 6 years. Results indicated that mothers’ internal explanations for children's misconduct may either reduce or increase children's later HAB depending on the specific content of attributions, such that mothers’ belief that children misbehave because of their internal state (i.e., emotional state or temperament) was associated with lower levels of child HAB, whereas attributing power‐based motives (i.e., manipulative, controlling intentions) in children was associated with higher levels of HAB. The findings are discussed with respect to appreciating the complexity of parents’ explanations for children's behavior, and considering parental cognition as a potential target for early identification and prevention of child HAB and related problems.     

Death Does Not Become Us

Abstract

The social issues of death, dying and bereavement represent important but neglected research areas, and such issues need attention both for practical reform and for deciphering what living with intellectual disability entails. The difficulties which life poses for people with intellectual disabilities may well persist in the times before and after death. As research issues they offer not only potential practical significance, but also a means of determining the social status and value of people with intellectual disabilities. This paper reviews the issues of death and dying from the viewpoint of sociological research and seeks to identify the ways death and dying have been treated within the research literature on living with intellectual disability. It is suggested that these issues have been discounted with some important consequences for the way intellectual disability is perceived. Important areas for research in this area are highlighted.     

Lone Parents and Welfare‐to‐Work in England: A Spatial Analysis of Outcomes and Drivers

Mirroring changes across nations of the Organisation for Economic Co‐operation and Development, recent UK governments have redrawn lone parents' entitlement to social assistance benefits ever tighter around participation in the labour market. A radical shift since 2008 has been the gradual transfer of most non‐employed lone parents into the ‘activating’ Jobseekers' Allowance (JSA) regime. The enhanced conditionality requirements of this JSA regime have been justified by both paternalistic and contractualist arguments but, however justified, are built on the premise that behavioural factors drive lone parent employment outcomes, a view made increasingly forcefully under the current Coalition government. This article uses up‐to‐date administrative data at local authority level across England to provide a geographical perspective into the sub‐national changes in lone parent employment outcomes since the transfer to JSA from 2008, as well as the relevant importance of the alternative structural and behavioural accounts to these outcomes. The findings suggest that the JSA transfer has increased lone parent employment, that structural rather than behavioural drivers are more relevant causal factors and that there is good reason to be concerned about the effect of the reforms on the well‐being of lone parents and their children.