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While much attention and emphasis have been given to the role and value of advisory groups in social science research, less has been published on the experiences of those involved in such collaborative efforts. This article reflects on the experiences of academics, collaborators and self-advocacy experts who formed an advisory group for a research project focused on people with learning disabilities' experiences of renting their own homes. Our paper describes the collaboration, how it changed because of Covid and because of changing relationships, and what worked well and what was challenging. This is in part because these more transparent accounts of working together are sometimes missing from research. We discuss issues relating to bureaucratic research systems which are largely inaccessible to people with learning disabilities and how we approached these. We also highlight the joys and benefits of the research approach that we adopted as well as the challenging and more difficult aspects. Plain English summary: This article tells the story of a research project about people with learning disabilities who rent their own homes in England. The article is not so much about the research findings but more about how the research team worked together. This group included self-advocacy experts with learning disabilities, research collaborators and academic researchers. At the start of the project, people with learning disabilities were invited to be part of an advisory group. But as the project went on, this group started to challenge the limits of the role and wanted to be more involved. This changed the course of the research—as well as the fact that it was happening at the same time as the Covid pandemic. The group had some difficult issues to deal with including complicated ethics processes, bureaucracy about getting people paid, and disagreements about language and terminology. We had some hard conversations about the words we use in academia and in real life and who gets to do research. We also had lots of fun wearing silly glasses at Christmas and talking about carrier pigeons. In the end we all felt that the way the research was carried out had improved the project overall. [ABSTRACT FROM AUTHOR]

Accessible summary: When people with learning disabilities have children and become parents, they sometimes need good support to help them.Research about parents with learning disabilities and the support they get is usually about mothers and not fathers. There is not very much written about dads with learning disabilities.This paper is about interviews with eight dads with learning disabilities who told us about what it was like to be a dad and about the kind of support they had got.We think more support needs to be given to parents with learning disabilities and that dads should be included in this. Background: This article reports on the perspectives of fathers with a learning disability in England about being fathers and the support they have received. Although there is an established literature that considers parenting with a learning disability, few studies have focused on the perspectives of fathers. Method: We adopted a qualitative approach for this study, using semi‐structured interviews with eight fathers with learning disabilities, recruited through learning disability organisations and social media. The data were analysed using thematic analysis. Results: Being a father was important to participants and the findings are presented in three themes: descriptions of fatherhood; challenges of fatherhood; and support with fatherhood. Conclusion: We discuss how fathers' perspectives on fatherhood relate to wider transformations of fatherhood in society, the impact of these on fathering with a learning disability and the implications for services. [ABSTRACT FROM AUTHOR]

Disabled men have traditionally been seen as incomplete men or as entirely gender-less. Research which has looked at the intersection of disability and male gender has largely treated disabled men as a homogeneous group with little reference to, for example, impairment-related differences. The ongoing move towards self-directed, personalised social care in England suggests that support needs relating to gender may be taken more seriously. A qualitative study with 20 men with Duchenne muscular dystrophy in England in 2013 explored the men's experiences of the organisation and delivery of social care as it pertained to their sense of being men. Our main finding was that social care in its broadest sense did little to support a positive sense of masculinity or male gender. More often than not the organisation and delivery of social care people de-gendered or emasculated many of the men who took part in the study. Our paper speaks to the need to explore impairment-specific issues for disabled men; to deliver a more person-centred approach to social care which recognises the importance of the social and sexual lives of disabled men; and to create ways in which men can support and empower each other to assert essential human rights relating to independence, dignity and liberty. [ABSTRACT FROM AUTHOR]

Accessible Summary This study goes back to look at some research which was about gay, lesbian, bisexual and transgender ( LGBT) people with learning disabilities., Have things got better or worse for LGBT people as this research was performed?, It is hard to say whether things have changed because we still do not know very much about the experiences of LGBT people with learning disabilities themselves., Summary 'Secret Loves, Hidden Lives?' was a piece of research which explored the lives and loves of gay, lesbian and bisexual people with learning disabilities. The research arguably influenced the development of policy in that same sex relationships were subsequently mentioned in English government policy on learning disability. The research had an extensive programme of dissemination, and whilst no systematic attempt was made to measure the impact of the dissemination or the research, this study suggests ways in which the research might (or might not) have made a difference in relation to: telling untold stories, supporting front line workers with practical resources, challenging negative assumptions held by staff in services and putting LGBT people with learning disabilities in touch with each other. The study also considers work which was left undone and reflects on the opportunities to support LGBT people with learning disabilities in the current context of financial austerity. [ABSTRACT FROM AUTHOR]

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

Supporting young disabled people at the transition to adulthood has long proved to be a challenging task. Young men with Duchenne muscular dystrophy (DMD) have until recently died before they reached adulthood. Now they are living longer but with a corresponding lack of forethought about how they should be supported in adulthood. This study investigated in three regions of England what was happening for young men with DMD and how they were being supported. Semi-structured interviews were conducted with 37 young men (aged 15+) with DMD and 58 other family members. The findings suggested that too many young men had finished education and training and were at home during the day without meaningful activity. In part, the complicated nature of shifting expectations across the life-course had made planning for an adult life with DMD very challenging. This could be exacerbated by problematic assumptions and stubborn barriers. [ABSTRACT FROM AUTHOR]

Research which involves disabled children and young people now constitutes a fairly well-established body of work in the social sciences. However, discussion on the role of the (normally adult) researcher has arguably been marginalised in the much-needed exploration of disabled children's 'voices'. Drawing on a qualitative study of the transition to adulthood for young men with Duchenne muscular dystrophy, this paper reflects on the interview 'encounter' between the interviewer, young men and their families. It suggests that we may learn more about the experiences of disabled children and young people if we can find ways of describing the co-production of responses, non-responses and meaning within research interviews. [ABSTRACT FROM AUTHOR]

Despite increasing policy commitment by government to the inclusion of children with special educational needs in mainstream services, significant numbers of disabled children continue to be placed away from their family home and community in residential schools. Reliable statistical information on them is elusive and there has been a dearth of research on how placement decisions are made and what the experience of such placements for disabled children and their families is like. This article reports on the policies and practice of 21 education and social service authorities in England in this area, the patterns of residential placements and the apparent reasons for them. It also highlights points of concern in relation to the protection and promotion of the welfare of disabled children in residential schools, and the apparent lack of clarity on the part of local authorities with regard to their duties in this area. Copyright © 2002 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

It is now widely accepted that the risk of unemployment has increased with the growth of flexible working practices in the UK and other European countries. Important questions, however, are raised about the extent to which these risks are understood by individuals and families in what has been termed the 'risk society' and, if perceived, how risks are managed both in terms of responses within the workplace and the family. These questions are central at a time when welfare provision is undergoing restructuring and an increasing emphasis is being placed on the market and individualised responses. This paper explores these issues, drawing on 90 qualitative interviews with members of 50 employed households in England. The study shows that individuals and families make complex assessments of labour market risk which do not necessarily accord with more objective measures and assumptions made at a policy level, and that they are not always willing or able to protect themselves. It concludes that current labour and welfare policies, together, leave many families, particularly those in lower socio-economic groups, vulnerable to the impacts of a flexible labour market, and that these realities need to be better incorporated into the risk society thesis. Aujourd'hui il est generalement admis que les risques du chomage ont augmente avec le developpement des pratiques de l'emploi flexible au Royaume Uni et dans d'autres pays europeens. Cependant d'importantes questions sont posees pour savoir comment ces risques son compris par les individus et les familles dans ce qu'on appelle 'la societe a risque', et lorsqu'ils sont compris, comment sont-ils geres dans le cadre du travail et de la famille. Ces questions sont d'un interet primordial a un moment ou on assiste a la restructuration de l'aide sociale et ou l'accent est mis sur les reponses individuelles et celles du marche. Cet article aborde ces questions a partir de 90 entretiens qualitatifs avec les membres de 50 familles salariees en Angleterre. Les resultats de cette etude montrent que les individus et les familles font des evaluations complexes des risques du marche de l'emploi qui ne correspondent pas toujours aux mesures objectives et aux previsions emises au niveau de la politique generale, et qu'ils ne sont pas toujours disposes ou en mesure d'assurer leur propre protection. En conclusion, il apparait que les politiques actuelles de l'emploi et de la protection sociale laissent de nombreuses familles, notamment celles des groupes socio-economiques defavorises, a la merci des effets du marche de l'emploi flexible et qu'il est necessaire de mieux integrer ces realites dans la these de la societe a risque. [ABSTRACT FROM AUTHOR]