Every child matters and the quality of life of disabled children.
This assignment explores the perceived quality of life of children with disabilities, and the impact of the United Kingdom Government ‘Every Child Matters’ initiative.
The World Health Organisation (WHO) define quality of life as ‘ the individual’s perception of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns’.
This is an excellent definition as it places the emphasis on the perspective of the child, and in that respect is inherently free from value judgements from ‘typically developing’ adults and researchers.
Montieth (1999) quoted in Lewis et al (2008) looked at a cross section children with varying disabilities during her study; one of the most striking components of her research was that the children in most cases had exactly the same aspirations as their ‘typically developing’ counterparts. Some wished to win the lottery or get married, have a house or even relatively minor emancipation requests such as have a front door key, only one child made mention of their disability.
Lewis (2008) quoted in Fraser et al (2008) further added weight to this view when she discussed disability as moving from a ‘medical model’ to a ‘social model’ whereby society is disabling and not the child. I witnessed an example at my local swimming pool of this yesterday; a 15yr old mobility impaired girl was accompanied by her mother to the swimming pool. The following issues were politely raised by her mother at the end of the visit:
1. No suitable changing area, only the disabled toilet was semi-suitable and this meant the young lady being placed onto a wet, cold tiled floor. 2. A transfer chair with a defective wheel, broken strap and seemingly a life of its own. 3. A defective pool lifting system for lowering and lifting into the pool. 4. Lack of staff trained in manual handling of less able customers.
A trip to the local swimming pool for a typically developing child is normally a fun occasion, with minimal stress on the parents. Clearly this was an occasion that most take for granted and in this case was a fairly stressful example of how society is in effect disabling as opposed
to any medical condition. This impacts on the overall quality of life of the child and indeed their family, specifically in relation to the ‘be healthy’ strand of every child matters (2003).
Generally studies investigating quality of life (QoL) have rated children with disabilities as lower than typically developing children, but these studies are often written with a subjective view from a typically developing adult as noted by Colver (2008) who remarked that children with disabilities have a sense of self from birth which incorporates their [physical] impairment and embraces growth, development and living with the same excitement as most children.
Colver (2008) in his conclusion adds, ‘There is widespread acceptance of the need for disabled children to be fully integrated into society but there needs to be further attitudinal change. QoL studies already tell us that pity and sorrow should not be directed towards disabled children [children with disabilities] as they experience most of life as non-disabled [typically developing] children. Maximum effort in needed to support social and educational policies that recognize the similarity of the lives of disabled children to those of other children, and that ensure their right as citizens, rather than as disabled children, to participate as fully in society as other children.’
The current Government initiative is the Every Child Matters agenda, developed by the Department for Education, Education and Skills. This framework has been embedded within all of the country’s public service providers ranging from...