Participation of disabled children and young people in decision making within social services departments: A survey of current and recent activities in England

A survey of all social services departments in England was undertaken in order to identify and investigate current work concerning the participation of disabled children within decision making regarding their own care and in service development. Developing a culture of, and good practice in, children's participation is integral to government policy. Results demonstrate that disabled children are being involved in a range of decision-making areas; however, participation is not yet embedded or sustained across all social services departments, and the involvement of disabled children at a higher strategic level is still rare. The participation of disabled children needs further development including more evidence on which factors can support and promote disabled children's effective participation

Listening and responding? Children's participation in health care within England

This article examines recent health policy developments in England in relation to children's rights under Article 12 and 13 of the United Nations Convention on the Rights of the Child (UNCRC). It draws on practice and research literature to explore evidence regarding: children's participation both within decisions about their own care and concerning the development of health services, their access to mechanisms that allow them a voice, the provision of and need for accessible information, and factors which prevent or facilitate children's participation. The paper does not explore in detail issues concerning children's consent or competence to participate

'Making Choices in my Life': Listening to the ideas and experiences of young people in the UK who communicate non-verbally

Service user participation and making choices are frequently advocated, however, they are complex concepts and how they are translated and/or experienced in everyday life can vary amongst different groups of service users. Recognising the importance of participation in current international guidance and UK government policy this paper seeks to explore how research can include a frequently marginalised group of disabled young people, in particular young people with learning disabilities and/or who communicate non-verbally. The paper discusses the use of non-traditional research methods, especially symbols based interviews developed in an ongoing English longitudinal study exploring choices and decision-making processes for young people with life limiting conditions. The paper then presents some research findings and concludes by discussing their implications. In particular, the use of symbols based interviews for informing policy makers about how these young people can be included in research and how listening to them can inform our understanding of decision-making processes

Provision of services for rehabilitation of children and adolescents with congenital cardiac disease: a survey of centres for paediatric cardiology in the United Kingdom

A postal questionnaire survey of the 17 centres for paediatric cardiology in the UK investigated the attitudes of staff towards rehabilitation and the current level of provision. The majority of respondents (82%) believed they should provide rehabilitation for their patients, but only one centre had a programme for rehabilitation. Few respondents (18%) believed they were meeting the needs of their patients' for rehabilitation. Major barriers to providing rehabilitation were funding and the wide geographical catchment areas

Using a model of group psychotherapy to support social research on sensitive topics

This article describes the exploratory use of professional therapeutic support by social researchers working on a sensitive topic. Talking to recently bereaved parents about the financial implications of their child's death was expected to be demanding work, and the research design included access to an independent psychotherapeutic service. Using this kind of professional support is rare within the general social research community, and it is useful to reflect on the process. There are likely to be implications for collection and interpretation of data, research output and the role and experience of the therapist. Here, the primary focus is the potential impact on researcher well-being

Models of Multi-agency Services for Transition to Adult Services for Disabled Young People and those with Complex Health Needs: Impact and Costs. Report to the Department of Health

The research aimed to provide evidence of what works in developing and implementing multi-agency co-ordinated transition services for disabled young people and those with complex health needs and their families: ? To investigate arrangements across local authority areas in England for multi- agency assessment for, planning of and actual transfer from child to adult services for young people with disabilities or complex health needs. ? To compare the implementation and operation of different models of transition services. ? To assess outcomes for parents and young people of provision of different models of transition services. ? To investigate sources of funding and costs of different models of transition services

What works in services for families with a disabled child?

This report discusses effective practice with families who have disabled children up to the age of sixteen. The evidence reviewed comes from research, examples of good practice and parents’ views. The authors acknowledge that the report is deficient in not directly addressing the views of children themselves. The intended audience are those responsible for the social welfare of children and their families. Notions central to the report’s approach are that the child should be seen first and the disability second, and that parental support should concentrate more on the ‘parenting’ than on the ‘caring’. The report situates itself in the field of ‘disability’ by examining and defining what is meant by disability and how this will affect notions and judgements about interventions. Medical and social models of disability are contrasted and the importance of taking a social model approach is emphasised. The report also emphasises the importance of understanding the role that families, as opposed to services, play in managing their particular situation. The policy and practice context is covered by a review of the evolution of children and disability legislation and their associated implications for service provision. Two main bodies of research have been drawn on within the report: i) studies that have sought to identify which factors help / hinder families in their efforts to cope ii) studies that describe the needs of disabled children and their families. The report takes a needs-based approach, identifying seven key areas of need