Author
CLARKE Harriet
Title
Preventing social exclusion of disabled children and their families: literature review paper produced for the national evaluation of the Children's Fund
Journal citation/publication details
Great Britain . Department for Education and Skills, 2006
Summary
This review appears to be a scoping exercise designed to provide a 'clear map of the ground', rather than a full scale systematic review. However, the author has attempted to be transparent about the sources she has used, and how they have been searched. The review focuses on material family resources (including housing) and their impact on inclusion/exclusion, and on existing service provision in the UK . General policy recommendations are offered.
Context
The social model of disability, and human rights claims to social justice, are identified as 'key contexts' for the review in Chapter 1. Social model approaches aim to understand the experience of disabled people in relation to personal autonomy, while the human rights dimension focuses on understanding and challenging the oppression and discrimination thy may face.
Methods
What sources were used?
The following databases were searched: Web of Knowledge; ASSIA (Applied Social Science Index and Abstracts); Social Services Abstracts; and Electronic Library of Social Care [now Social Care Online]. In addition, the British Library catalogue was searched, and the websites of the following bodies: Department of Health; Department for Education and Skills; Office of the Deputy Prime Minister; Research in Practice; Joseph Rowntree Foundation; and voluntary organisations including Contact a Family, Barnardo's and the Family Trust Fund.
What search terms/strategies were used?
The terms prevent*, disab*, child*, disabled child*, child* with disabilit*, policy, policies, service, services, special needs, special educational needs were used 'in combination with one another', and material published after 1995 was selected. The author notes that the combination of a wide range of search terms and the broad approach taken to inclusion and disability provided a large number of hits that required lengthy screening. She also notes that the broader research literature (i.e. including much more clinically, psychologically or educationally based material) has not been covered.
What criteria were used to decide on which studies to include?
Inclusion/exclusion criteria are not specified in detail. The review examines the currently available research evidence on the needs for, and impacts of, preventative (rather than critically responsive) services on disabled children and their families, including non-disabled siblings. The primary focus is on children aged 5-13 who live at home.
Who decided on their relevance and quality?
The author made these judgements, but no details are given. In conducting a scoping exercise, she may have been concerned more with relevance to the review question than to issues of methodological quality.
How many studies were included and where were they from?
This is not clear, although all documents appear to be listed in the references to the report. Given the focus of the review many, if not all, are from the UK .
How were the study findings combined?
The review is narrative in nature, with the material presented in two main sections: material family resources (finance and housing) and their implications for inclusion; and current directions in service provision for disabled children and their families.
Findings of the review
Material family resources and inclusion
While poverty and social exclusion are not 'entirely synonymous', it is clear that a knowledge of socio-economic circumstances, including housing, is important for understanding exclusion. There is 'convincing evidence' that families with a disabled child are more likely to be marginalised economically because of issues such as the impact on parents' ability to work, and the practical costs of dealing with disability. Such families may live in poorer quality housing as a result, but housing problems are evident across the income span, with research highlighting issues such as lack of space, lack of equipment, inadequate bathrooms and access difficulties. The psychological and material impacts of low income and poor housing 'will reduce all family members' resources for increasing activity within the home, and engaging in desired activities outside the home.'
Service provision
Research emphasises the disruptive effect of fragmented services. However, while the importance of an integrated approach is recognised by both professionals and parents, in many cases families themselves have to take on the co-ordinating role, with implications for the time they have available for leisure and rest.
Education provision has 'clear implications' for the social inclusion of disabled children, and inclusive policies have reduced segregation. However, this needs to be considered within the context of a rapid decline in special school provision and concerns about whether 'ordinary' schools are able to provide a fully inclusive environment. Evidence on the broader issue of 'special' vs. 'mainstream' service provision remains mixed. While the latter can sometimes be inadequate, the former can be marginalising, and disabled children themselves express different views on this issue.
Educational inclusion has been the main focus of research but this needs to be considered alongside other factors in the home and the community, for example access to leisure and play facilities. This is often restricted for disabled children and, as a result, for their non-disabled siblings and parents. It is important to remember that while disabled children (and their families) may face specific barriers to social participation and inclusion, their needs are often the same as those of other children.
Authors' conclusions
In Chapter 4 the author reflects on the messages from the literature, which highlight the past exclusion of the voices of disabled children from research, especially studies that take 'medicalising/impairment based approaches'. More recent studies that actively involve parents or siblings help to ensure a more 'whole family' approach but may also risk marginalising the disabled child. However, in general, 'disabled children's rights as children are increasingly being articulated by parents, young people, and within service standards'. In addition, more 'dynamic' research perspectives that consider the child's personal and social inter-relationships along the life span are increasingly in tune with policy development.
Implications for policy or practice
'Key messages' are outlined as follows:
The organisation and provision of services for disabled children need to take account of the resource limits faced by parents, and resources within the local community. 'The implications of strategies to combat child poverty for families that include a disabled child require specific examination.'
Tackling the exclusion of disabled children and their families requires policy makers to address not only barriers to inclusion in public spaces, but in the home itself.
Inclusion should be considered 'with clear reference to children's key relationships'. This means a whole-family approach that identifies the individual and shared needs of the parents and all the children in a family. Challenging 'disabling attitudes', that can affect all family members, is important.
The Disability Discrimination Act 1995, and subsequent related legislation, provides 'a key context within which to support the development of services'.
Access to involvement in local mainstream schools as pupils (or visitors from special schools) could be a way of improving social networks for both children and parents, perhaps through 'extended school provision'. Schools may also be valuable as potential sites for multi-agency service provision.
Although education is important, there needs to be 'a greater focus' on children's experience away from school, and the potential of community- rather than school-based services to better meet the needs of some disabled children.
Multi-agency working is identified by both professionals and parents as key, but there needs to be greater shared understanding to overcome barriers caused by different concepts and discourses (for example, in relation to 'special educational needs' and 'disability').