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Abstract
Government reports, campaigning groups and parents all value the goal that families with disabled children should live 'ordinary lives'. Yet evidence of the impact of childhood disability on finances, housing, relationships, family life and mental health all points to barriers that families face to achieving this. With numbers of disabled children rising significantly, increasing numbers of families are living with disabled children and experiencing a life that feels very far from ordinary. Support services, both within health and the local authority, may use a medical model of disability that fails to acknowledge some of these challenges. This paper aims to raise awareness of some of the issues faced by families with disabled children and argues for a more holistic, social model of disability that takes account of the needs of the whole family when considering support needs, not only the needs of the disabled child. This has the potential to reduce the social and practical cost of supporting disabled children, improve outcomes for the whole family, and enable families to enjoy their children within a family life that feels something much closer to 'ordinary'.
Key words
Disabled children, ordinary lives, poverty, social model of disability
Community Practitioner, 2010; 83(4): 19-22.
Introduction
Ordinary (adjective): with no distinctive features; normal or usual.1
The National Service Framework for children, young people and maternity services Standard 8 states: 'Children and young people who are disabled or who have complex health needs (should) receive co-ordinated high quality child and familycentred services which are based on assessed needs, which promote social inclusion and, where possible, which enable them and their families to lead ordinary lives' (p5).2
This theme of 'ordinary lives' is continued in the report Improving the life chances of disabled people, which states that measures should: 'Enable young disabled children and their families to enjoy "ordinary" lives, through access to childcare, early education and early family support' (p222).3
It is not only a goal of government - the first campaign objective of Every Disabled Child Matters is: 'Families with disabled children to have ordinary lives.'4
Yet the notion of an Ordinary life' remains a very distant goal for some families with a disabled child. This paper intends to review the evidence around the impact of living with...