Understanding the social exclusion and stalled welfare of citizens with learning disabilities

Despite the UK’s recent history of promoting the social inclusion and equality of men and women with learning disabilities they remain a significantly disadvantaged group. Compared with their non‐disabled peers they are more likely to be unemployed, less likely to own their own homes and are at a significantly greater risk of physical and mental ill health. The first part of this paper discusses the welfare rights of citizens with learning disabilities in terms of New Labour’s welfare to work policies. The second part discusses the UK’s mixed welfare economy and its impact upon services for men and women with learning disabilities. The paper concludes by considering whether the social inclusion of men and women with learning disabilities can be promoted solely through policies that emphasise inclusion through work and the personalisation of welfare services.     

Not Such an 'Ordinary' Relationship: the role of women support staff in relation to men with learning disabilities who have difficult sexual behaviour

This paper brings together some preliminary data on the management of men with learning disabilities who have unacceptable/abusive sexual behaviour patterns with a small pilot study which specifically explores the roles of women support workers in relation to difficult sexual behaviour. A specific focus on the behaviour of men with learning disabilities is justified because of consistent evidence that it is men, rather than women, service users who challenge services in this way. The studies explore with staff the boundaries of what is considered acceptable sexual behaviour and how breaches of these are responded to within services. One issue which we have chosen to highlight is the frequent exposure of women staff to the men's sexual behaviour, sometimes precipitated by the unusual relationship that exists between the two parties, and exacerbated by the lack of clear management guidance within the gendered hierarchies found in service agencies.     

Forced marriage of people with learning disabilities: a human rights issue

This paper reports some of the findings of an exploratory study which sought to better understand the demographics of forced marriage of people with learning disabilities and the contexts in which such marriages may occur. It was found that forced marriages of people with and without learning disabilities showed broad similarities in relation to ethnicity, some differences in terms of age and substantial differences in terms of gender. Men and women with learning disabilities are equally likely to be victims of forced marriage. The reasons for people with learning disabilities being forced to marry are most often associated with a desire on the part of families to secure permanent care, but can also be associated with cultural (mis)understandings of the nature of disability. These findings are contextualised by considering the relationship between forced marriage, human rights and learning disability.     

‘Angry,when things don’t go my own way’: what it means to be gay with learning disabilities

This article presents six poems constructed by George, a gay man with learning disabilities, who took part in an arts-based project for men with learning disabilities. The poetry reflects upon George’s feelings relating to his sexual desires, his longing for a loving relationship and his frustration and anger at not having control over his life. Like other people who are gay with learning disabilities, George regularly encountered stigma because of his disability and Lesbian, Gay, Bisexual, Transgender and Queer status, limiting the development of meaningful relationships, and increasing the resentment and anger George felt about life. Thus, barriers remain for people with learning disabilities who are gay. With this in mind, the aim of presenting the poems in this article is to develop further understandings of what it means to be a gay person with learning disabilities using poetry in an arts-based project.     

Family Dilemmas and Secrets: parents' disclosure of information to their adult offspring with learning disabilities

This paper describes the role parents play in providing knowledge of learning disability to their adult offspring with learning disabilities. Data were derived from an in-depth qualitative study of the nature of parent-adult-offspring co-residence. The findings reveal that while parents recognised and had to deal with the stigma learning disability exerted in their own lives, they had taken steps to prevent their adult offspring from having to deal with similar difficulties. It is argued that it remains the case that learning disability is treated as a stigmatised identity and as such is rendered invisible through the strategic control of information. However, findings point towards the conclusion that there has been a cultural reversal in how this process is managed.     

How people with disabilities experience programs to prevent intimate partner violence across four countries

Women with disabilities are more vulnerable to violence, including intimate partner violence (IPV), yet the majority of emerging IPV prevention programs fail to explicitly consider the needs of participants with disabilities. Women and men living with disabilities engaged with IPV prevention programs in four countries were interviewed to explore how disability shaped their experiences of gender, violence, IPV, and whether the programs met their disability related needs. In-depth interviews were conducted with 16 women and 15 men living with disabilities in Ghana, Rwanda, Tajikistan and South Africa. The data were analysed thematically and compared across the settings. Participants described experiencing disability-related stigma, discrimination, exclusion, and for women, increased vulnerability to IPV. Barriers to full participation in programs included limited accessibility, and lack of disability-specific materials, recruitment or outreach. Enablers of inclusion included recruitment and monitoring strategies aimed at people with disabilities, partnering with a local disabled people’s organization, training staff in disability inclusion, and raising awareness of disability rights. The data encouragingly suggests that inclusion of women and men with disabilities in IPV prevention programs designed for the general population has beneficial outcomes. Inclusion can prevent violence, promote their wellbeing, support economic empowerment, and challenge disability-related stigma and discrimination.     

Healthcare for men and women with learning disabilities: understanding inequalities in access

Healthcare for men and women with learning disabilities (known internationally as intellectual disabilities) has risen up the political agenda in the United Kingdom, propelled by a report from the charity Mencap. This report has resulted in renewed efforts, set out in Valuing People Now, to ensure that people with learning disabilities receive the healthcare they are entitled to. This paper, drawing upon experience in England, describes the challenges of providing healthcare to men and women with learning disabilities; reviews Death by Indifference and the reports produced in its aftermath; presents findings from a small-scale study of access to healthcare undertaken in the East of England; and concludes with a discussion of whether the policies in Valuing People Now will improve healthcare for men and women with learning disabilities.     

Not lazy,not faking: teaching and learning experiences of university students with disabilities

This study explores the learning and teaching experiences of 105 disabled students mostly based in England, but with international voices. Students with disabilities are under-represented in universities and tend to have worse post-degree outcomes despite similar attainment rates to their peers. This presents a social justice issue. This article focuses on classroom experiences of these students. Using a survey with qualitative and quantitative elements, students were asked to give details about their experiences in taught settings, about their relationships with academic staff, and about their aspirations. Their responses have been analysed thematically and have been discussed in the context of the discourse around epistemic ignorance and social justice. The study finds that students may feel concerned about anonymity in disclosing disabilities and may be concerned about the way that others perceive them. The study finds that students perceive academic staff as often improperly trained for inclusive teaching.     

'Managing' disability: early experiences of university students with disabilities

Recent UK legislation, operational from December 2006, places a duty on all public authorities, including higher education institutions, to actively promote equality of opportunity for people with disabilities. The university studied here has a number of initiatives in place to develop good practice in this area, but how do students themselves experience that provision? Research about people with disabilities has sometimes alienated them by failing to reflect their own perspectives. This study, explicitly aimed at incorporating students' voices and using interview and video data, offers some insight into students' experiences of the aids and obstacles to an inclusive learning environment at one university.     

Sexual abuse in adulthood: Ongoing risks for people with learning disabilities

This paper reports findings of a 3-year research programme into the sexual abuse of adults with learning disabilities conducted at the University of Kent. Inconsistent reporting to and by services can be seen in the results, including lack of agreed practice around consent to sexual activities between service users. Abuse is also perpetrated by staff, volunteers, family members and other known and trusted adults. Thus both definition and detection are important competencies for services to develop. Abuse reported was predominantly perpetrated by men on both women and men with learning disabilities, and the gender issues raised by tackling sexual abuse in unequal staff teams, with their male style of management and a female workforce, are considered. Outcomes of the reporting process are considered and services for adults are urged to take a more proactive stance.     

‘Trial by fire’: forms of impairment disclosure and implications for disability identity

This article examines the ways in which people living with non-apparent impairments, sometimes called ‘invisible disabilities,’ choose to disclose their impairments to friends, colleagues, and supervisors. Drawing on life-history narratives conducted with 12 men and women who acquired non-apparent impairment through accident, injury, or illness, this analysis demonstrates that people who have acquired non-apparent impairment use three primary forms of disclosure – confessional, pragmatic, and validating – serving as mechanisms by which individuals internalize the stigma associated with disability, pragmatically acquire accommodations, or resist and challenge ableist views. This analysis shows the ways that disclosure more broadly, and these forms specifically, play important roles in developing and negotiating disability identity.     

Children with severe learning disabilities: needs,services and costs

This study looks at how services are used by children with severe learning disabilities living at home and explores the associated total and component costs. Multivariate and bivariate analyses are employed and the results interpreted alongside information on parents' perceptions of their children's needs for healthcare. There is some evidence to suggest costs were associated with greater needs but there is also evidence of under‐provision of formal care supports, particularly mental health services. Copyright © 2002 John Wiley & Sons, Ltd.     

Promoting effective working with parents with learning disabilities

The children of parents with learning disabilities are increasingly coming to the attention of child protection and children in need services. The current framework within which services are delivered identi?es the need to work cooperatively both across agencies and with parents themselves. The decisions taken by practitioners in the course of their assessment and support work should be in?uenced by a recognition of where the risks to this group of children lie and which factors are most likely to be associated with positive outcomes. This paper outlines risks to children associated with the parents' dif?culty in accessing appropriate antenatal care and the risk of developmental delay arising from both genetic and environmental in?uences. This group of children are also more likely to experience behaviour problems and language delay. Research has indicated a risk of neglect, but abuse, where it does occur, is more likely to be associated with partners or relatives. It is also clear that some children are more at risk than others, and intellectually able children, as well as those with high levels of dependency, may be the most vulnerable. Risks can be reduced when parents have access to good family and social support networks and professional support which is acceptable to them. Maintaining a small family size can also be helpful. If parents have had positive childhood emotional experiences, their chances of successful parenting are increased. Copyright © 2004 John Wiley & Sons, Ltd.     

‘I shouldn’t be living there because I am a sponger’: negotiating everyday geographies by people with learning disabilities

Learning disability policy has for some time been framed by the goal of inclusion which purports to enable people with learning disabilities to lead a ‘life like any other’ person. This article examines the extent to which this is the case in England, by tracing the lived experiences of people with learning disabilities within their communities. The article draws on two interlinked qualitative studies involving interviews that examined their local place-based experiences of inclusion and exclusion. The findings reveal ‘moments of inclusion’ and opportunities for social encounter from peer support, but these were situated amidst wider experiences of exclusion and harassment.     

Citizens with learning disabilities and the right to vote

This paper asks, in the context of recent legislative changes, what can be done to support more citizens in England and Wales with learning disabilities to vote in national elections? This issue is addressed through (i) a review of recent disability access campaigns that have reported discrimination against, and the under‐representation of, adults with disabilities in UK elections; (ii) a review of recent research undertaken in the USA into the assessment of competence to vote and research undertaken in England that conclusively documents the under‐representation of voters with learning disabilities in the 2005 general election. It is proposed that a ‘functional approach’ to developing an individual's capacity to vote could help to fulfil Article 29 of the United Nations' Convention on the rights of persons with disabilities that gives all people the same political rights.     

Social work students field training as an opportunity to develop best practice in disabilities: the case of Jordan

This article outlines an innovative field for training efforts that foster the abilities of undergraduate social work students so that they are able to empower local communities in disability issues. It discusses the contribution of social work education in improving livelihoods of families with disabled members, challenging families as well as attitudes of local communities towards the disabled. Social work students were placed in a centre for children with developmental disabilities for a period of eight months. At this stage of their training, students were required to demonstrate their skills in working with individuals, families and communities. They were also required to identify opportunities for interventions that addressed stigma and social inclusion. Key outcomes from students’ voices were captured through their field notes, some limited observations and focus group discussions. The field training demonstrated that students managed to establish a support group for mothers with disabled children to provide a safe place to share their experiences. Student outcomes highlighted that the field experience was effective and feedback from families indicated that training raises disability awareness and facilitates women’s access to existing support systems. In addition, it engages professionals and families to work together in developing a long-term strategy to reduce isolation and exclusion, as well as to tackle health and social inequalities in Jordan.     

Identifying the needs of parents with learning disabilities: A review

Despite the success of some programmes in raising the parental competency of parents who have learning disabilities, many services are still providing only minimal support to such families, often following crisis intervention. Recent legislative changes within the UK have meant that statutory services are now required to adopt a preventative approach to children and families in need. A review of the literature reveals that children of learning-disabled parents are particularly vulnerable to abuse/neglect and removal from their natural family. This article addresses the difficulties that many clinicians currently experience in the early identification of parents who have learning disabilities. It also emphasizes the need for a systematic approach in the assessment of these parents prior to the implementation of parental teaching programmes.     

Predictors of cyber-victimization of higher-education students with and without learning disabilities

Higher-education institutes today face an uphill battle in trying to restrain online misbehavior. This study examined the cyber-victimization experience of 1,052 higher education students with and without learning disabilities. All participants completed five online questionnaires regarding cyber-victimization, social support, self-perception, well-being, and body perception. Results revealed that compare to students without learning disabilities a higher proportion of students with learning disabilities reported cyber-victimization. Positive associations were found between students with learning disabilities and cyber-victimization, and negative correlations between students with learning disabilities, self-perception and well-being. Regression analysis indicated that for students with learning disabilities, predictors of cyber-victimization were low social support, low self-perception, and being female, whereas for students without learning disabilities, the predictors were low social support, low well-being, and low body perception.     

Assessing parents with learning disabilities: The parental skills model

Definitions of what constitutes adequate or inadequate parenting continue to be unclear. Not surprisingly, professionals who are required to formulate opinions regarding parental competency often experience difficulties with this task. These difficulties are further compounded when the assessment involves parents with learning disabilities. They comprise a heterogeneous population many of whom have varying deficits and skills. The Parental Skills Model outlined in this paper is offered as a guide to professionals in their assessment of such parents. The model focuses on three primary areas which have been identified as crucial to parenting, namely, parents' life skills, familial history and access to support/resources. When difficulties are encountered by parents with learning disabilities in any of these three areas it appears to have a direct and indirect effect on the child's care and development. A model of good practice is proposed and illustrated with a case study.     

Making sense in conversations about learning disabilities

This article describes an integrative, multisystem clinical approach to the psychological and relational problems that develop around learning disabilities. Positioned in relationships with children, families, and schools, the therapist addresses the emotions, interpersonal conflicts, and problematic beliefs that contribute to problems. Using clinical skills to contain and relieve painful emotions, the therapist soothes "inflammation at the boundaries" of relationships among children, families, and schools, depolarizing conflicts within and between systems. Familiar with developmental and educational psychology and developmental neurobiology, the therapist makes this specialized knowledge intelligible to children, families, and teachers. This article describes two specific methods, the chart of strengths and weaknesses and the map of learning functions, which facilitate communication of specialized knowledge about children with learning disabilities. The therapist uses expert knowledge to help members of the treatment system transform blaming, helpless, or hopeless interpretations of the problem into more hopeful constructions, which support healthy development.