Analyse The Impact Of Disability On Disabled Children
What is the Impact of disability on children’s experiences of childhood?
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’ …show more content…
adults and researchers.
Montieth[1] (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[2] (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).[3]
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)[4] 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 the Police to Education, in fact any organisation that comes into contact with children and young person’s must have a strategy in place for meeting their obligations in relation to the 5 outcomes as listed below:
• Be healthy • Stay safe • Enjoy and achieve • Make a positive contribution • Achieve economic well being.
Sloper[5] (2008) notes that these policies provide a context for which agencies are expected to deliver services which achieve the best possible outcomes, aiming to ensure that the children most at risk of social exclusion have their needs catered for and ‘don’t fall through the cracks of the system’ often only brought to light during child neglect cases.
Sloper conducted semi-structured interviews with over 100 children with disabilities and their carers, although this research tends to focus on an educational perspective it is clear that there
is still a lacuna of services available to overcome the social barriers to disability encountered by children with disabilities.
Emotional well being for example in children with Autistic spectrum Disorders (ASD) was seen by their parents as fundamental and more important than any other type of curriculum learning, parents felt that social interaction skills were more important to their children. This often caused conflict with teachers as they were focussed on academic goals and national curriculum levels, with many parents saying that teacher’s would often apologize for their child’s low attainment academically; whereas the parents would prefer an altered curriculum that concentrated on more practical life skills. Sloper argues that if we concentrate solely on life skills those that can achieve will not be given the opportunity and in the desire to create a more inclusive pedagogy we may actually provide further barriers to learning and achievement.
Emotional support is however seen as a key requirement for all children with disabilities regardless of the severity of their impairment; many special needs provisions have this support but there are very few mainstream schools that have such a provision some 7 years after the initial launch of Every Child Matters, such support so widely requested may have a significant impact upon the QoL of children with disabilities.
Another aspect of ECM ‘staying safe’ was also highlighted by Sloper (2009) and Colver (2008) in the QoL study being inappropriate accommodation. Many typically developing children have accidents within the home, the frequency of such accidents can be much higher for children with disabilities especially if their needs have not been met by the local authority and they are living in unsuitable housing or using appropriate and unsafe equipment. Often specialist equipment for children with complex healthcare needs (CHN) requires fitting and training for the operator, often this is deemed too expensive and inadequate methods of lifting and moving children are utilised which can cause injury to both the child and the carer.
All three studies highlighted that social interaction for children with disabilities as being one of the most important aspect of their development, even for children with the most complex healthcare needs (CHN) and most severe cognitive impairment; this socialisation process was still seen as one of the most important factors in child development. It was noted by parents however that further social barriers exist that prevent children with disabilities socialising outside of a local authority or charity organised setting, in effect children with disabilities generally only see their friends at school and at home. (if possible) It is of concern that there are limited facilities for children with disabilities to go and meet up and although more common of late, public recreation facilities such as parks and swimming pools do not always cater for such users; even though this can be argued as contravening primary legislation such as the Disability Discrimination Act as well as the ECM initiative.
Sloper (2009) and Qureshi[6] (2001) felt in their research that parents perceived their children with disabilities to be marginalised in their local communities, and in order to ‘make a positive contribution’ children would have to have the same access and activities as their typically developing counterparts.
Montieth (1999) in her aforementioned study of children with disabilities in Northern Ireland recognised that all children are not necessarily going to be able to make an economic contribution, with many of her research subjects being heavily reliant upon disability benefits and student grants. Often it is very difficult indeed for young adults with disabilities to achieve employment, specifically in rural areas which has been worsened by the current economic climate.
This is a key issue, children with disabilities have exactly the same aspirations as their typically developing counterparts and a job is seen as key to self-sufficiency (where possible) and some control over their finances and consumer choices; but more importantly most children linked this to being able to afford their own housing and getting married. Legislation has helped employers to facilitate the employment of young adults with disabilities with grants being made available to make suitable adaptations as required, but another worry for parents is how well are educational establishments preparing the children for work, developing independent thinking and social skills required in the workplace?
Montieth identified only one of her young adults in a research study of 76 had actually gained a ‘paying job’ the rest of which being solely reliant upon benefit funding or family support.
Conclusion
The interrelationships between overall quality of life and the different outcomes of ECM in the different areas of children’s lives highlight the need for multi-agency partnership.
Sloper (2008) identifies correctly that areas such as friendship, skill acquisition, opportunities to make choices and to take part in a variety of activities are not confined to one context and the support provided in that context. If the agencies concerned had a more ’joined-up’ approach they could use their resources more effectively and contribute to achieving of more than one outcome as opposed to what is seen as a piecemeal approach by each establishment. (school, healthcare provision, activity project etc.)
The aforementioned parent in the swimming pool asked why the management had not consulted the Occupational Therapists at the local authority when designing-in and ordering their facilities for users with disabilities; which highlights this piecemeal approach.
Often a lack of knowledge, training and understanding could be the cause. This is an area where ECM appears to have faltered, each public service that comes into contact with young people are required to have a strategy and policies in place to support ECM, but how many have consulted other social providers and looked at ways of ‘dovetailing’ their provision in the spirit of inter-agency working; this could involve using shared resources and providing an overall better service and further remove social barriers to participation for children with disabilities.
Although the Every Child Matters policy was initially driven by social security and child welfare failings such as Victoria Climbie and baby P and their respective public enquiries, it is clear that children with disabilities are encompassed by this remit and although some progress has been made, commentators and researchers have not seen this progress driven by the ECM initiative but by existing primary legislation (Sloper, 2009) such as Disability Discrimination Acts and the various Education …show more content…
Acts.
Further achievement in these 5 strand areas would require in many cases further specialist support to ensure children with disabilities are not denied opportunities available to their typically developing counterparts; this will need to be addressed further in order for this Policy to be successful and most importantly for children with disabilities to be given the same opportunities as typically developing children to achieve their potential and realise their aspirations.
[Word Count 1995]
REFERENCE LIST
Childrens Act (1989) London : Her Majesty’s Stationary Office. (OPSI)
Colver, A. (2008) Measuring quality of life in studies of disabled children. Pediatrics and Child Health Volume 18, 2008. Chapter 9. pp. 423-426.
Connors, C., Stalker, K.
(2003) The views and experiences of disabled children and their siblings : A positive outlook. Jessica Kingsley : London.
DfES (2003). Every Child Matters. Department for Education and Skills Publications : Nottingham.
Fraser, S., Lewis, V., Ding, S., Kellett., & Robinson, C. (2007) Doing Research With Children and Young People. London: Sage.
Hirst, M., and Baldwin, S. (1994) Unequal Opportunities : Growing up disabled. HMSO : London.
Lewis, V., Kellett, M., Robinson, C., Fraser, S. & Ding, S. (2007) The reality of doing research with children and young people. London : Sage.
Sloper, P. (2009) Every Child Matters outcomes: What Do They Mean for Disabled Children and Young People? Children and Society Vol. 23 (2009) pp. 265-278
UN Convention on the rights of the child, 1989 (UNESCO)
-----------------------
[1] Montieth (1999) quoted in Lewis, V., Kellett, M., Robinson, C., Fraser, S. & Ding, S. (2007) The reality of doing research with children and young people. London : Sage.
[2] Fraser, S., Lewis, V., Ding, S., Kellett., & Robinson, C. (2007) Doing Research With Children and Young People. London: Sage.
[3] DfES (2003). Every Child Matters. Department for Education and Skills Publications :
Nottingham.
[4] Colver, A. (2008) Measuring quality of life in studies of disabled children. Paediatrics and Child Health Volume 18, 2008. Chapter 9. pp. 423-426.
[5] Sloper, P. (2009) Every Child Matters outcomes: What Do They Mean for Disabled Children and Young People? Children and Society Vol. 23 (2009) pp. 265-278
[6] Qureshi, H (ed.) (2001) Outcomes in Social Care Practice, Number seven. Social Policy Research Unit, University of York : York.
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’ …show more content…
adults and researchers.
Montieth[1] (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[2] (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).[3]
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)[4] 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 the Police to Education, in fact any organisation that comes into contact with children and young person’s must have a strategy in place for meeting their obligations in relation to the 5 outcomes as listed below:
• Be healthy • Stay safe • Enjoy and achieve • Make a positive contribution • Achieve economic well being.
Sloper[5] (2008) notes that these policies provide a context for which agencies are expected to deliver services which achieve the best possible outcomes, aiming to ensure that the children most at risk of social exclusion have their needs catered for and ‘don’t fall through the cracks of the system’ often only brought to light during child neglect cases.
Sloper conducted semi-structured interviews with over 100 children with disabilities and their carers, although this research tends to focus on an educational perspective it is clear that there
is still a lacuna of services available to overcome the social barriers to disability encountered by children with disabilities.
Emotional well being for example in children with Autistic spectrum Disorders (ASD) was seen by their parents as fundamental and more important than any other type of curriculum learning, parents felt that social interaction skills were more important to their children. This often caused conflict with teachers as they were focussed on academic goals and national curriculum levels, with many parents saying that teacher’s would often apologize for their child’s low attainment academically; whereas the parents would prefer an altered curriculum that concentrated on more practical life skills. Sloper argues that if we concentrate solely on life skills those that can achieve will not be given the opportunity and in the desire to create a more inclusive pedagogy we may actually provide further barriers to learning and achievement.
Emotional support is however seen as a key requirement for all children with disabilities regardless of the severity of their impairment; many special needs provisions have this support but there are very few mainstream schools that have such a provision some 7 years after the initial launch of Every Child Matters, such support so widely requested may have a significant impact upon the QoL of children with disabilities.
Another aspect of ECM ‘staying safe’ was also highlighted by Sloper (2009) and Colver (2008) in the QoL study being inappropriate accommodation. Many typically developing children have accidents within the home, the frequency of such accidents can be much higher for children with disabilities especially if their needs have not been met by the local authority and they are living in unsuitable housing or using appropriate and unsafe equipment. Often specialist equipment for children with complex healthcare needs (CHN) requires fitting and training for the operator, often this is deemed too expensive and inadequate methods of lifting and moving children are utilised which can cause injury to both the child and the carer.
All three studies highlighted that social interaction for children with disabilities as being one of the most important aspect of their development, even for children with the most complex healthcare needs (CHN) and most severe cognitive impairment; this socialisation process was still seen as one of the most important factors in child development. It was noted by parents however that further social barriers exist that prevent children with disabilities socialising outside of a local authority or charity organised setting, in effect children with disabilities generally only see their friends at school and at home. (if possible) It is of concern that there are limited facilities for children with disabilities to go and meet up and although more common of late, public recreation facilities such as parks and swimming pools do not always cater for such users; even though this can be argued as contravening primary legislation such as the Disability Discrimination Act as well as the ECM initiative.
Sloper (2009) and Qureshi[6] (2001) felt in their research that parents perceived their children with disabilities to be marginalised in their local communities, and in order to ‘make a positive contribution’ children would have to have the same access and activities as their typically developing counterparts.
Montieth (1999) in her aforementioned study of children with disabilities in Northern Ireland recognised that all children are not necessarily going to be able to make an economic contribution, with many of her research subjects being heavily reliant upon disability benefits and student grants. Often it is very difficult indeed for young adults with disabilities to achieve employment, specifically in rural areas which has been worsened by the current economic climate.
This is a key issue, children with disabilities have exactly the same aspirations as their typically developing counterparts and a job is seen as key to self-sufficiency (where possible) and some control over their finances and consumer choices; but more importantly most children linked this to being able to afford their own housing and getting married. Legislation has helped employers to facilitate the employment of young adults with disabilities with grants being made available to make suitable adaptations as required, but another worry for parents is how well are educational establishments preparing the children for work, developing independent thinking and social skills required in the workplace?
Montieth identified only one of her young adults in a research study of 76 had actually gained a ‘paying job’ the rest of which being solely reliant upon benefit funding or family support.
Conclusion
The interrelationships between overall quality of life and the different outcomes of ECM in the different areas of children’s lives highlight the need for multi-agency partnership.
Sloper (2008) identifies correctly that areas such as friendship, skill acquisition, opportunities to make choices and to take part in a variety of activities are not confined to one context and the support provided in that context. If the agencies concerned had a more ’joined-up’ approach they could use their resources more effectively and contribute to achieving of more than one outcome as opposed to what is seen as a piecemeal approach by each establishment. (school, healthcare provision, activity project etc.)
The aforementioned parent in the swimming pool asked why the management had not consulted the Occupational Therapists at the local authority when designing-in and ordering their facilities for users with disabilities; which highlights this piecemeal approach.
Often a lack of knowledge, training and understanding could be the cause. This is an area where ECM appears to have faltered, each public service that comes into contact with young people are required to have a strategy and policies in place to support ECM, but how many have consulted other social providers and looked at ways of ‘dovetailing’ their provision in the spirit of inter-agency working; this could involve using shared resources and providing an overall better service and further remove social barriers to participation for children with disabilities.
Although the Every Child Matters policy was initially driven by social security and child welfare failings such as Victoria Climbie and baby P and their respective public enquiries, it is clear that children with disabilities are encompassed by this remit and although some progress has been made, commentators and researchers have not seen this progress driven by the ECM initiative but by existing primary legislation (Sloper, 2009) such as Disability Discrimination Acts and the various Education …show more content…
Acts.
Further achievement in these 5 strand areas would require in many cases further specialist support to ensure children with disabilities are not denied opportunities available to their typically developing counterparts; this will need to be addressed further in order for this Policy to be successful and most importantly for children with disabilities to be given the same opportunities as typically developing children to achieve their potential and realise their aspirations.
[Word Count 1995]
REFERENCE LIST
Childrens Act (1989) London : Her Majesty’s Stationary Office. (OPSI)
Colver, A. (2008) Measuring quality of life in studies of disabled children. Pediatrics and Child Health Volume 18, 2008. Chapter 9. pp. 423-426.
Connors, C., Stalker, K.
(2003) The views and experiences of disabled children and their siblings : A positive outlook. Jessica Kingsley : London.
DfES (2003). Every Child Matters. Department for Education and Skills Publications : Nottingham.
Fraser, S., Lewis, V., Ding, S., Kellett., & Robinson, C. (2007) Doing Research With Children and Young People. London: Sage.
Hirst, M., and Baldwin, S. (1994) Unequal Opportunities : Growing up disabled. HMSO : London.
Lewis, V., Kellett, M., Robinson, C., Fraser, S. & Ding, S. (2007) The reality of doing research with children and young people. London : Sage.
Sloper, P. (2009) Every Child Matters outcomes: What Do They Mean for Disabled Children and Young People? Children and Society Vol. 23 (2009) pp. 265-278
UN Convention on the rights of the child, 1989 (UNESCO)
-----------------------
[1] Montieth (1999) quoted in Lewis, V., Kellett, M., Robinson, C., Fraser, S. & Ding, S. (2007) The reality of doing research with children and young people. London : Sage.
[2] Fraser, S., Lewis, V., Ding, S., Kellett., & Robinson, C. (2007) Doing Research With Children and Young People. London: Sage.
[3] DfES (2003). Every Child Matters. Department for Education and Skills Publications :
Nottingham.
[4] Colver, A. (2008) Measuring quality of life in studies of disabled children. Paediatrics and Child Health Volume 18, 2008. Chapter 9. pp. 423-426.
[5] Sloper, P. (2009) Every Child Matters outcomes: What Do They Mean for Disabled Children and Young People? Children and Society Vol. 23 (2009) pp. 265-278
[6] Qureshi, H (ed.) (2001) Outcomes in Social Care Practice, Number seven. Social Policy Research Unit, University of York : York.