The siblings of children with special needs are often the overlooked ones in families struggling to cope. The author is an experienced health professional and journalist who has a sister with cerebral palsy. In this book she shares the story of her journey from confusion and distress to understanding and acceptance. She provides a forum for other siblings to describe their own journeys. She also provides strategies that siblings themselves, parents and practitioners can use to support the brothers and sisters of children with special needs.
The siblings of children with special needs are often the overlooked ones in families struggling to cope. The author is an experienced health professional and journalist who has a sister with cerebral palsy. In this book she shares the story of her journey from confusion and distress to understanding and acceptance. She provides a forum for other siblings to describe their own journeys. She also provides strategies that siblings themselves, parents and practitioners can use to support the brothers and sisters of children with special needs.
This book explores the range of supports that parents find effective and how those supports might be improved or better mobilized. It draws from studies on the general population as well as specific service users, to highlight issues common to parents in a wide variety of circumstances.
This book explores the range of supports that parents find effective and how those supports might be improved or better mobilized. It draws from studies on the general population as well as specific service users, to highlight issues common to parents in a wide variety of circumstances.
Extended abstract:
Author
QUINTON David;
Title
Supporting parents: messages from research. Publisher
Jessica Kingsley, 2004.
Summary
This book explores the range of supports that parents find effective and how those supports might be improved or better mobilized.
Context
For many years non-technical summaries of research programmes and initiatives funded by the Department of Health (DH) Children’s Social Care section have been produced, intended to make messages from the research useful and intelligible to policy makers, service providers and practitioners. Each is produced through a distinctive process and written by an academic expert, incorporating policy makers’ and practitioners’ comments, and tries to ensure that researchers are happy with the synthesis produced.
Method
The Supporting Parents initiative is unusual within this tradition in that it included such a diversity of projects. It was therefore not possible to convene a group to comment; such a group would have been too diverse for discussions to be productive. Instead, meetings between the researchers and the policy customers from the DH discussed emerging findings and their connection with the policymaking process. When the studies were nearly complete each team nominated two non-academic professionals knowledgeable in the topic and involved in service delivery who read and commented on the project. A smaller ‘overview group’ of policy makers and members of the independent and voluntary sectors also read and commentated on the overview text as it developed. Finally, when the text was sufficiently advanced relevant sections were sent back to the researchers for comments on their accuracy and on whether the important messages had been drawn out.
Contents
The report draws from studies on the general population as well as specific service users to highlight issues common to parents in a wide variety of circumstances. It is divided into 3 parts. The first. ‘Background and concepts’, has 3 chapters, on the Supporting Parents Research Initiative, support and parenting, and the policy context. The second, ‘Parenting and its supports’, has 4, on studies in the general population, studies of foster care, parenting and support in the context of disability, and supporting parents who may be hard to help. The third has a single chapter pulling together findings and ideas that go across the studies. Appendices give researchers’ summaries of their studies and list the readers and overview group members. There are also subject and author indexes.
ISBN 1 84310 210 2
Subject terms:
medical treatment, parent-child relations, parents, physical disabilities, standards, children, families;
The key messages of the report include: supportive practice with disabled parents will often involve working closely with professionals in other agencies; disabled parents want support that is timely, appropriate, and flexible and which fits in with, rather than undermines, family life; disabled parents are a diverse group, not only in terms of their impairments and family situation, but in terms of the way they see professionals as helping them. A one-size-fits-all approach to supporting disabled parents will not address this diversity. Good practice may involve large and complex packages of support, but may also include low-cost imaginative solutions to particular problems. Support should be needs-led; disabled parents' perceptions of any difficulties, and their preferred way of solving them, should be at the centre of the relationship between professionals and parents. Support should be flexible enough to respond quickly to the predictable and unpredictable changes in family circumstances as children grow up. The report includes sections on: ·the legislative and policy context; what disabled parents have to say about good practice; what research from a social model of disability perspective has to say about good practice with disabled parents; and strategic issues in the development of policies regarding supporting disabled parents. It also has a section on examples of improving practice, which covers a wide spectrum of social work tasks including referral, assessment service provision and review. It ends with information about a number of other organisations that may be able to provide information, advice and support to disabled parents.
The key messages of the report include: supportive practice with disabled parents will often involve working closely with professionals in other agencies; disabled parents want support that is timely, appropriate, and flexible and which fits in with, rather than undermines, family life; disabled parents are a diverse group, not only in terms of their impairments and family situation, but in terms of the way they see professionals as helping them. A one-size-fits-all approach to supporting disabled parents will not address this diversity. Good practice may involve large and complex packages of support, but may also include low-cost imaginative solutions to particular problems. Support should be needs-led; disabled parents' perceptions of any difficulties, and their preferred way of solving them, should be at the centre of the relationship between professionals and parents. Support should be flexible enough to respond quickly to the predictable and unpredictable changes in family circumstances as children grow up. The report includes sections on: ·the legislative and policy context; what disabled parents have to say about good practice; what research from a social model of disability perspective has to say about good practice with disabled parents; and strategic issues in the development of policies regarding supporting disabled parents. It also has a section on examples of improving practice, which covers a wide spectrum of social work tasks including referral, assessment service provision and review. It ends with information about a number of other organisations that may be able to provide information, advice and support to disabled parents.
Subject terms:
legal aid, models, parental role, parent-child relations, parents, physical disabilities, policy, social care provision, assessment, good practice;
Parents of disabled children and young people care passionately about the services they receive. Parents have strong views on the services they get; whether agencies are working together and most of all whether the needs of their child are truly being met. The aims of this guide are to: raise awareness of the opportunities for parents to play an active role in shaping services; encourage parental participation, by giving examples of parent initiatives and successful joint working between parents and professionals; and encourage parent representatives and parent groups to be proactive in requiring appropriate standards of support and recognition for the contribution they make.
Parents of disabled children and young people care passionately about the services they receive. Parents have strong views on the services they get; whether agencies are working together and most of all whether the needs of their child are truly being met. The aims of this guide are to: raise awareness of the opportunities for parents to play an active role in shaping services; encourage parental participation, by giving examples of parent initiatives and successful joint working between parents and professionals; and encourage parent representatives and parent groups to be proactive in requiring appropriate standards of support and recognition for the contribution they make.
Subject terms:
parental role, parent-child relations, participation, physical disabilities, social services, social care provision, access to services, children;
Parents of disabled children and young people care passionately about the services they receive. Parents have strong views on the services they get; whether agencies are working together and most of all whether the needs of their child are truly being met. The aims of this guide are to: raise awareness of the opportunities for parents to play an active role in shaping services; encourage parental participation, by giving examples of parent initiatives and successful joint working between parents and professionals; and encourage parent representatives and parent groups to be proactive in requiring appropriate standards of support and recognition for the contribution they make.
Parents of disabled children and young people care passionately about the services they receive. Parents have strong views on the services they get; whether agencies are working together and most of all whether the needs of their child are truly being met. The aims of this guide are to: raise awareness of the opportunities for parents to play an active role in shaping services; encourage parental participation, by giving examples of parent initiatives and successful joint working between parents and professionals; and encourage parent representatives and parent groups to be proactive in requiring appropriate standards of support and recognition for the contribution they make.
Subject terms:
parental role, parent-child relations, participation, physical disabilities, social services, social care provision, access to services, children;
Children and Society, 18(4), September 2004, pp.278-290.
Publisher:
Wiley
A literature review was carried out to establish what evidence exists about disabled children's participation in decision-making, both regarding their own lives and about the shape of service delivery. There is evidence that disabled children hold and can express views, given the right environment. However, participation of disabled children needs further development. Measures proposed include addressing organisational systems so that they promote participation, extending advocacy services, the adoption of inclusive approaches and staff training, plus education and information for disabled children and their parents. There remain significant gaps in the research evidence available.
A literature review was carried out to establish what evidence exists about disabled children's participation in decision-making, both regarding their own lives and about the shape of service delivery. There is evidence that disabled children hold and can express views, given the right environment. However, participation of disabled children needs further development. Measures proposed include addressing organisational systems so that they promote participation, extending advocacy services, the adoption of inclusive approaches and staff training, plus education and information for disabled children and their parents. There remain significant gaps in the research evidence available.
Subject terms:
literature reviews, parent-child relations, participation, physical disabilities, service development, social care provision, staff development, children, decision making;
Journal of Ethnic and Cultural Diversity in Social Work, 13(1), 2004, pp.1-18.
Publisher:
Taylor and Francis
Place of publication:
Philadelphia, USA
The level of self-advocacy skills in Asian American parents of young children with developmental disabilities was assessed. The relationship of self-advocacy skills with social support and with disabilitybased discrimination was investigated. Correlates of self-advocacy skills were explored. Asian American parents of young children with developmental disabilities in this study scored a significantly lower level of assertiveness and other self-advocacy skills than did their non-Asian American counterparts. The level of self-advocacy skills in Asian American parents was found to be positively correlated with the level of social support those parents had received, and negatively correlated with the level of disability-based discrimination against their children with developmental disabilities. Longer length of stay of Asian American parents in the United States was found to be associated with a higher level of self-advocacy skills. The practical implications of the findings of this study are discussed. (Copies of this article are available from: Haworth Document Delivery Centre Haworth Press Inc., 10 Alice Street Binghamton, NY 13904-1580)
The level of self-advocacy skills in Asian American parents of young children with developmental disabilities was assessed. The relationship of self-advocacy skills with social support and with disabilitybased discrimination was investigated. Correlates of self-advocacy skills were explored. Asian American parents of young children with developmental disabilities in this study scored a significantly lower level of assertiveness and other self-advocacy skills than did their non-Asian American counterparts. The level of self-advocacy skills in Asian American parents was found to be positively correlated with the level of social support those parents had received, and negatively correlated with the level of disability-based discrimination against their children with developmental disabilities. Longer length of stay of Asian American parents in the United States was found to be associated with a higher level of self-advocacy skills. The practical implications of the findings of this study are discussed. (Copies of this article are available from: Haworth Document Delivery Centre Haworth Press Inc., 10 Alice Street Binghamton, NY 13904-1580)
Subject terms:
learning disabilities, parent-child relations, parents, physical disabilities, self-advocacy, social work, Asian people, children, cultural identity, ethnicity;
This book was written after speaking with 15 parents of children with special educational needs throughout Scotland about their child’s experiences of inclusive education in mainstream school. The families interviewed included children and young people at all stages of education from nursery right through to 18 year olds just about to leave school, and a range of experiences of education and inclusion from very positive to very negative. The experiences that are recounted in this book are real life illustrations of what it is like for families to include their children in mainstream schools in Scotland today. These accounts provide practical examples of what works and what doesn’t work to make pupils and their families feel like an included part of their chosen mainstream school. The book explores all aspects of school inclusion including the policy context, access to information, planning and support of inclusive placements, legal exclusions from mainstream school and the benefits of inclusion for everyone.
This book was written after speaking with 15 parents of children with special educational needs throughout Scotland about their child’s experiences of inclusive education in mainstream school. The families interviewed included children and young people at all stages of education from nursery right through to 18 year olds just about to leave school, and a range of experiences of education and inclusion from very positive to very negative. The experiences that are recounted in this book are real life illustrations of what it is like for families to include their children in mainstream schools in Scotland today. These accounts provide practical examples of what works and what doesn’t work to make pupils and their families feel like an included part of their chosen mainstream school. The book explores all aspects of school inclusion including the policy context, access to information, planning and support of inclusive placements, legal exclusions from mainstream school and the benefits of inclusion for everyone.
Subject terms:
learning disabilities, parent-child relations, physical disabilities, placement, school children, school exclusion, special education, special educational needs, children, education;
Disability and Society, 19(3), May 2004, pp.209-223.
Publisher:
Taylor and Francis
This article describes a qualitative study on the experiences of mothers with physical disabilities. Two focus groups were held for mothers with young children and mothers of older children. Eight mothers also participated in in-depth interviews. All have a physical impairment, most are wheelchair users. This article focuses on (a) participants' attempts to ensure the physical and psychological well-being of their children; (b) their child-rearing philosophies and practices; and (c) the overall nature of the parent-child relationship. A range of parenting practices, experiences and relationships was reported. The variability of experiences notwithstanding, participants' life stories demonstrate a strong commitment to children, actions to ensure their care and well-being, and attempts to shield them from any burden related to the maternal disability. Whilst challenges and barriers were candidly reported, by and large, they do not overshadow the joy and fulfilment that these women derive from motherhood.
This article describes a qualitative study on the experiences of mothers with physical disabilities. Two focus groups were held for mothers with young children and mothers of older children. Eight mothers also participated in in-depth interviews. All have a physical impairment, most are wheelchair users. This article focuses on (a) participants' attempts to ensure the physical and psychological well-being of their children; (b) their child-rearing philosophies and practices; and (c) the overall nature of the parent-child relationship. A range of parenting practices, experiences and relationships was reported. The variability of experiences notwithstanding, participants' life stories demonstrate a strong commitment to children, actions to ensure their care and well-being, and attempts to shield them from any burden related to the maternal disability. Whilst challenges and barriers were candidly reported, by and large, they do not overshadow the joy and fulfilment that these women derive from motherhood.
Children and Society, 18(3), June 2004, pp.194-206.
Publisher:
Wiley
The impact of childhood on success in adulthood has been much researched. This paper discusses how parental expectations, social class, childhood experiences and gender influenced the career success of disabled people. For respondents with congenital disabilities, disability was perceived as a primary factor influencing parental expectations, but those with acquired disabilities felt it was gender. Social class played a significant part in all respondents' childhood socialisation and parental expectations. Some experienced deprivation and trauma as children, encouraging them to master future life events. The findings highlight the importance of childhood socialisation to the career success of disabled people.
The impact of childhood on success in adulthood has been much researched. This paper discusses how parental expectations, social class, childhood experiences and gender influenced the career success of disabled people. For respondents with congenital disabilities, disability was perceived as a primary factor influencing parental expectations, but those with acquired disabilities felt it was gender. Social class played a significant part in all respondents' childhood socialisation and parental expectations. Some experienced deprivation and trauma as children, encouraging them to master future life events. The findings highlight the importance of childhood socialisation to the career success of disabled people.