Canavan, M

Cheskin, A

Dawson, N

Kyle, JG

Palmer, N

Willoughby, A

English

Changes in policy and attitudes of central government in the last ten years have offered to parents of children with special needs a central role in decision-making in regard to their children in all aspects of service. Following a series of meetings beginning in 2005, a group of parents, professionals and researchers, set out a vision of creating an integrated family-focused and family-led set of services for deaf children and their families in the South West Region of England. The motivation for this effort drew on the experience of two “Early Excellence Centres” – one in East London and the other in the North West - and of the work of the Family Centre for Deaf Children (FCDC) in Bristol. As a precursor to the development, the Stepping Stones project set out to consult with representatives of the primary stakeholders in the region. Funding for the project was obtained from the Medical Research Council Hearing and Communication Group in Manchester, within the developing context of the National Newborn Hearing Screening Programme and was supported by BANES PCT. Background The Every Child Matters Initiative (DfES, 2003) and the corresponding health initiatives (eg DoH 2007) have in turn led to a campaign in respect of children with special needs. “Every Disabled Child Matters (www.edcm.org.uk) wants… • Families with disabled children to have ordinary lives • Disabled children to matter as much as all other children • Disabled children and their families to be fully included in society • All disabled children and their families to get the right services and support – no matter where they live • Poverty amongst disabled children and their families to be cut by 50% by 2010 and eliminated by 2020 • An education system that meets the needs of each child and enables them to reach their full potential • Disabled children and their families to shape the way that services are planned, commissioned and delivered Not surprisingly there has been a convergence and a huge impetus to integrated service provision. A formal expression of this is in the creation of Childrens’ Trusts (www.everychildmatters.gov.uk/aims/childrenstrusts ) which draw together all services in order to provide the seamless approach which is thought to be needed. As this project has been undertaken the Government initiative on “Aiming High for Disabled Children” (http://www.dcsf.gov.uk/everychildmatters/healthandwellbeing/ahdc/AHDC/ ) has come into force and this promises a great deal to parents . These developments are in their early stages and as we can see in the consultation carried out, has not reached the perceptions of parents of deaf children in the south west region. Our discussion with parents has the potential to inform the regional development and ensure more appropriate responses to the needs expressed. What we did We examined the current policy and research literature, we searched online for resources for deaf children in the South West, we talked to health and education staff involved in this work and we interviewed parents of deaf children. We obtained a considered view from the experiences of the Bristol Family Centre for Deaf |Children. We integrated these data sources and produced the report. Our consultation with the professionals The Newborn Hearing Screening Programme (http://hearing.screening.nhs.uk) has been introduced but the opportunities for families to shape the new services have been limited. The professionals have mainly relied on Children’s Hearing Services Working Groups (explained for example at http://www.scotland.gov.uk/Publications/2009/01/23140147/11 or at http://hearing.screening.nhs.uk/cms.php?folder=1955 ) as a means of consulting parents about their services. Objective family-led assessments or evaluations of the services have so far been limited or absent. Family groups as described, were mainly run by the professionals, and their uptake was generally variable. Professionals noted the limitations on fathers’ involvement. Among those who spoke to our interviewers, there was general support for the concept of a regional centre, but professionals raised a number of concerns that would need to be addressed. These include: the training and professionalism of parents who work with families, clarity about the respective roles of local and regional services and communications across a wide area. An impression is left that professionals can only be expected to provide services within their own professional competence and remit. They are not placed to address the wider social and cultural needs of families. On-line information about services in the South West Despite the general policy of open access and provision of information on local services any parent would have found it difficult to discover such things as the school options for their own child, a named person to provide information and even the extent of service support to a child in mainstream school. Websites of education authorities and health trusts were poorly organised from this perspective. The information presented appeared in such a diverse form with different conventions, that it was not possible to determine which activities matched which in other Local Authorities and Health Trusts. The Early Support programme (http://www.earlysupport.org.uk) provides online information designed to enable parents to take control of their child’s progress, and this was identified by educators in our study as an important national resource. Family Responses A common assumption that there exist ‘families of deaf children’ as a group was quickly dispelled by the range of experiences and circumstances which we encountered. Parents brought together by services provision for their deaf children, are unlikely to share any life interests or common ground other than that their children have a hearing loss. It seems unlikely that a 19 year-old unmarried mother would share a great deal with a solicitor-teacher couple who just happen to have a deaf child of the same age. Yet it is a common concept expressed by service providers that ‘parents of deaf children need x and should do y’. We found that some parents were overawed by the professional interventions while others wanted a more direct involvement. Some parents expected services to arrive while others wanted to challenge the service providers. At the same time, children differ enormously. Some have minor losses which may be susceptible to surgical intervention, some may use sign language and see Deaf culture as the goal. Managing this diversity was immediately a challenge for a regional family centre although clearly working on a larger regional scale might offer more opportunity for the matching of families. The notion that parents ought to be available at all times to support their children was also challenged by the reality of family life – which simply did not allow the parents time to attend hospital, meetings, learning sessions and be able to take the lead in working with other parents. Many would feel distinctly uncomfortable in expressing their views in public groups and would not necessarily have management skills to take part in a family-led initiative. The idea of a family created and family run centre may need to be superseded by the concept of family-led and family guided. Existing consultation methods with parents (eg Children’s Hearing Services Working Groups (CHSWGs)) were seen as “talking shops” ie lacking power for change, by those parents who actually knew what they were (the minority). Typically, parents believed they were offered services which already existed and not given the opportunity and time to express their own needs as a family. In regard to contact with the various professional staff they met, families reported: • Bias in professionals ie in respect of the other roles (accountability to education authority for example) held by the professional - there was a need for an independent voice in support. • The actual value to the family varied enormously from one professional to the other and this was compounded by the fleeting contacts (they come and go over the child’s lifetime) • Social services departments generally were not seen as making any useful contribution The Family Centre (Deaf Children) We received a description and analysis of the work of the Family Centre. This centre in Yate, Bristol, is a family led organisation for Deaf Children and their families, that has been running successfully for 15 years. The FCDC is reported to work well especially for those within reach of Bristol. Parent participation increases and decreases over time as the child’s developmental needs change. Having recently surveyed parent involvement, the Family Centre can identify priorities:. • Support at the time of confirmation • Maintenance of support after the time of school entry • More and better social involvement – especially for school kids and teenagers • Counselling / boosting self-confidence • Access to sign language • More support to and involvement of fathers. Conclusions Families clearly expressed the need for a type of provision that is not in evidence at this time in the South West region.. Independent support, matching to other families with similar experiences, opportunity to shape and select service provision, respect for the parent experience and aspirations – in effect the empowerment of the family voice - was considered to be unavailable at this time. Professional perspective is that opportunities for consultation exist and that personal contact with parents serves to give the targeted information for that child.Changes in policy and attitudes of central government in the last ten years have offered to parents of children with special needs a central role in decision-making in regard to their children in all aspects of service. Following a series of meetings beginning in 2005, a group of parents, professionals and researchers, set out a vision of creating an integrated family-focused and family-led set of services for deaf children and their families in the South West Region of England. The motivation for this effort drew on the experience of two “Early Excellence Centres” – one in East London and the other in the North West - and of the work of the Family Centre for Deaf Children (FCDC) in Bristol. As a precursor to the development, the Stepping Stones project set out to consult with representatives of the primary stakeholders in the region. Funding for the project was obtained from the Medical Research Council Hearing and Communication Group in Manchester, within the developing context of the National Newborn Hearing Screening Programme and was supported by BANES PCT. Background The Every Child Matters Initiative (DfES, 2003) and the corresponding health initiatives (eg DoH 2007) have in turn led to a campaign in respect of children with special needs. “Every Disabled Child Matters (www.edcm.org.uk) wants… • Families with disabled children to have ordinary lives • Disabled children to matter as much as all other children • Disabled children and their families to be fully included in society • All disabled children and their families to get the right services and support – no matter where they live • Poverty amongst disabled children and their families to be cut by 50% by 2010 and eliminated by 2020 • An education system that meets the needs of each child and enables them to reach their full potential • Disabled children and their families to shape the way that services are planned, commissioned and delivered Not surprisingly there has been a convergence and a huge impetus to integrated service provision. A formal expression of this is in the creation of Childrens’ Trusts (www.everychildmatters.gov.uk/aims/childrenstrusts ) which draw together all services in order to provide the seamless approach which is thought to be needed. As this project has been undertaken the Government initiative on “Aiming High for Disabled Children” (http://www.dcsf.gov.uk/everychildmatters/healthandwellbeing/ahdc/AHDC/ ) has come into force and this promises a great deal to parents . These developments are in their early stages and as we can see in the consultation carried out, has not reached the perceptions of parents of deaf children in the south west region. Our discussion with parents has the potential to inform the regional development and ensure more appropriate responses to the needs expressed. What we did We examined the current policy and research literature, we searched online for resources for deaf children in the South West, we talked to health and education staff involved in this work and we interviewed parents of deaf children. We obtained a considered view from the experiences of the Bristol Family Centre for Deaf |Children. We integrated these data sources and produced the report. Our consultation with the professionals The Newborn Hearing Screening Programme (http://hearing.screening.nhs.uk) has been introduced but the opportunities for families to shape the new services have been limited. The professionals have mainly relied on Children’s Hearing Services Working Groups (explained for example at http://www.scotland.gov.uk/Publications/2009/01/23140147/11 or at http://hearing.screening.nhs.uk/cms.php?folder=1955 ) as a means of consulting parents about their services. Objective family-led assessments or evaluations of the services have so far been limited or absent. Family groups as described, were mainly run by the professionals, and their uptake was generally variable. Professionals noted the limitations on fathers’ involvement. Among those who spoke to our interviewers, there was general support for the concept of a regional centre, but professionals raised a number of concerns that would need to be addressed. These include: the training and professionalism of parents who work with families, clarity about the respective roles of local and regional services and communications across a wide area. An impression is left that professionals can only be expected to provide services within their own professional competence and remit. They are not placed to address the wider social and cultural needs of families. On-line information about services in the South West Despite the general policy of open access and provision of information on local services any parent would have found it difficult to discover such things as the school options for their own child, a named person to provide information and even the extent of service support to a child in mainstream school. Websites of education authorities and health trusts were poorly organised from this perspective. The information presented appeared in such a diverse form with different conventions, that it was not possible to determine which activities matched which in other Local Authorities and Health Trusts. The Early Support programme (http://www.earlysupport.org.uk) provides online information designed to enable parents to take control of their child’s progress, and this was identified by educators in our study as an important national resource. Family Responses A common assumption that there exist ‘families of deaf children’ as a group was quickly dispelled by the range of experiences and circumstances which we encountered. Parents brought together by services provision for their deaf children, are unlikely to share any life interests or common ground other than that their children have a hearing loss. It seems unlikely that a 19 year-old unmarried mother would share a great deal with a solicitor-teacher couple who just happen to have a deaf child of the same age. Yet it is a common concept expressed by service providers that ‘parents of deaf children need x and should do y’. We found that some parents were overawed by the professional interventions while others wanted a more direct involvement. Some parents expected services to arrive while others wanted to challenge the service providers. At the same time, children differ enormously. Some have minor losses which may be susceptible to surgical intervention, some may use sign language and see Deaf culture as the goal. Managing this diversity was immediately a challenge for a regional family centre although clearly working on a larger regional scale might offer more opportunity for the matching of families. The notion that parents ought to be available at all times to support their children was also challenged by the reality of family life – which simply did not allow the parents time to attend hospital, meetings, learning sessions and be able to take the lead in working with other parents. Many would feel distinctly uncomfortable in expressing their views in public groups and would not necessarily have management skills to take part in a family-led initiative. The idea of a family created and family run centre may need to be superseded by the concept of family-led and family guided. Existing consultation methods with parents (eg Children’s Hearing Services Working Groups (CHSWGs)) were seen as “talking shops” ie lacking power for change, by those parents who actually knew what they were (the minority). Typically, parents believed they were offered services which already existed and not given the opportunity and time to express their own needs as a family. In regard to contact with the various professional staff they met, families reported: • Bias in professionals ie in respect of the other roles (accountability to education authority for example) held by the professional - there was a need for an independent voice in support. • The actual value to the family varied enormously from one professional to the other and this was compounded by the fleeting contacts (they come and go over the child’s lifetime) • Social services departments generally were not seen as making any useful contribution The Family Centre (Deaf Children) We received a description and analysis of the work of the Family Centre. This centre in Yate, Bristol, is a family led organisation for Deaf Children and their families, that has been running successfully for 15 years. The FCDC is reported to work well especially for those within reach of Bristol. Parent participation increases and decreases over time as the child’s developmental needs change. Having recently surveyed parent involvement, the Family Centre can identify priorities:. • Support at the time of confirmation • Maintenance of support after the time of school entry • More and better social involvement – especially for school kids and teenagers • Counselling / boosting self-confidence • Access to sign language • More support to and involvement of fathers. Conclusions Families clearly expressed the need for a type of provision that is not in evidence at this time in the South West region.. Independent support, matching to other families with similar experiences, opportunity to shape and select service provision, respect for the parent experience and aspirations – in effect the empowerment of the family voice - was considered to be unavailable at this time. Professional perspective is that opportunities for consultation exist and that personal contact with parents serves to give the targeted information for that child

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Stepping Stones: Family-led Services in the South West: Deaf children and their families

https://research-information.bris.ac.uk/files/8319465/steppingstones_report_final.pdf

Stepping Stones: Family-led Services in the South West: Deaf children and their families

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