An article examined the adoption of children with disabilities within the United Kingdom, to develop a framework to provide a theoretically informed and multi-dimensional approach to its understanding. The article said that the adoption outcomes for this group of children could only be understood within wider social processes, which could affect individual adoptions as well as the practice of adoption more generally, with implications for research and practice.
Source: Sarah Bunt, 'A framework for the analysis of the social processes in the adoption of disabled children', Journal of Social Work, Volume 14 Number 5
Links: Abstract
Date: 2014-Sep
An article examined estimates of societal economic costs, including indirect costs, associated with autistic spectrum disorders (ASDs) in the United Kingdom and the United States of America. It said that the cost of lifetime support for an individual with an ASD and intellectual disability was over $2 million in the United States and 1.5 million in the United Kingdom. It said that the largest cost components for children were special education services and parental productivity loss, while for adults the highest costs related to supported accommodation/residential care and individual productivity loss, and medical costs were much higher than for children. It discussed implications for policy, including in addressing the impact on parents.
Source: Ariane Buescher, Zuleyha Cidav, Martin Knapp, and David Mandell, 'Costs of autism spectrum disorders in the United Kingdom and the United States', Journal of American Medical Association Pediatrics, Volume 168 Issue 8
Links: Abstract | BBC report
Date: 2014-Aug
A series of reports provided results from stage 2 of an evaluation of the special educational needs and disability (SEND) pathfinder programme. SEND was intended to provide personalized care and assistance through a continual birth-to-25 system, and was due to be implemented from September 2014. Reports from the pathfinder evaluation covered topics including: findings from the qualitative research conducted with 31 families who participated in the new education, health and care planning pathway (and received an EHC plan); understanding the comparative costs of providing the special educational needs (SEN) processes for newcomers to the SEN system; collaborative working with the health sector; collaborative working with the social care sector; engagement of schools; and the transition to post-16 provision and engagement of providers in that sector.
Source: Lucy Smith, Genevieve Cameron, and Tim Vanson, Evaluation of the Special Educational Needs and Disability (SEND) Pathfinder Programme Impact Research Report: Qualitative research with families (second cohort), Research Report 356A, Department for Education
Links: Report | DE press release
Source: Meera Craston, Christopher Carr, Rhian Spivack, and Graham Thom, Evaluation of the Special Educational Needs and Disability Pathfinder Programme: Understanding the comparative costs of delivering the EHC planning and SEN Statementing processes for newcomers to the SEN system, Research Report 356B, Department for Education
Links: Report | DE press release
Source: Meera Craston, Tarran Macmillan, Kathryn Hill, and Christopher Carr, Evaluation of the Special Educational Needs and Disability Pathfinder Programme Thematic Report: Collaborative working with health, Research Report 356C, Department for Education
Links: Report | DE press release
Source: Rhian Spivack, Meera Craston, and Rachel Redman, Evaluation of the Special Educational Needs and Disability Pathfinder Programme Thematic Report: Collaborative working with social care, Research Report 356D, Department for Education
Links: Report | DE press release
Source: Kathryn Hill, Graham Thom, Christopher Carr, and Maya Agur, Evaluation of the Special Educational Needs and Disability Pathfinder Programme Thematic Report: Engagement of schools, Research Report 356E, Department for Education
Links: Report | DE press release
Source: Graham Thom, Maya Agur, and Kerry Daff, Evaluation of the Special Educational Needs and Disability Pathfinder Programme Thematic Report: Transition and the engagement of post-16 providers, Research Report 356F, Department for Education
Links: Report | DE press release
Date: 2014-Aug
An article examined issues of citizenship for young people with learning disabilities. The article looked at the further education, training, and employment experiences of a group of 20 young people as they negotiated the transition to adulthood.
Source: Gillian MacIntyre, 'The potential for inclusion: young people with learning disabilities experiences of social inclusion as they make the transition from childhood to adulthood', Journal of Youth Studies, Volume 17 Number 7
Links: Abstract
Date: 2014-Aug
A report examined the challenges for Black, Asian, and minority-ethnic (BAME) families in England who were affected by autism. It said that such families found particular difficulties with achieving a diagnosis, in accessing the services they needed, and in feeling supported by their local communities. It recommended that local authorities and clinical commissioning groups should: identify the needs of local BAME populations; ensure that culturally appropriate services were available; and monitor their effectiveness. It identified a role for central government to: monitor local action; provide relevant guidance to local authorities; and support further research in this area.
Source: Guy Slade, Diverse Perspectives: The challenges for families affected by autism from Black, Asian and Minority Ethnic communities, National Autistic Society
Links: Report | NAS press release
Date: 2014-Jul
A report examined findings from a cross-party inquiry into the provision of childcare for children with disabilities. It said that: 41 per cent of families with disabled children aged three and four were unable to access their full free entitlement to childcare and early years education, due to a chronic lack of appropriate settings or lack of funding; 86 per cent of parent carers who responded to a survey reported paying above average childcare costs; childcare problems had caused 72 per cent of families to reduce or give up work; the situation worsened as children got older; and local authorities, nurseries, and schools were unclear about their duties towards provision for children with disabilities. The report called for all parties to commit to developing appropriate provision for all children.
Source: Levelling the Playing Field for Families with Disabled Children and Young People, Parliamentary Inquiry into Childcare for Disabled Children
Links: Report | FCT press release
Date: 2014-Jul
The children's rights watchdog in Wales published a report that examined the implementation of the Breaks for Carers of Disabled Children (Wales) Regulations 2012, and the impact that the new regulations (as interpreted through local services statements) were now having in terms of provision for children and young people with disabilities and their carers. It said that appropriate short breaks provision could deliver significant long-term benefits, but there was a variety of provision across authorities that tried to meet a diverse range of need, and provision needed to be strengthened.
Source: Full Lives: A study of short breaks provision for children and young people with disabilities and their carers in Wales, Children's Commissioner for Wales
Links: Report
Date: 2014-Jul
A report examined the potential use of POET (a personal outcomes evaluation tool) for measuring impact in education, health and social care plans, and personal budgets for children and young people with special educational needs and/or disabilities. It said that the limited initial testing of the first iteration of the tool had demonstrated its potential.
Source: Measuring the Outcomes of EHC Plans and Personal Budgets, In Control
Links: Report
Date: 2014-Jul
An article examined how disabled children with little or no speech could be involved in their education. A project team worked with a group of young disabled people to develop ways in which they could take part in the research process.
Source: Debby Watson, Anthony Feiler, and Beth Tarleton, 'Involving young disabled people in the research process: the experiences of the PIE research project team', Children & Society, Volume 28 Number 4
Links: Abstract
Date: 2014-Jul
A paper examined the risk of bullying victimization among children with disabilities in England, drawing on longitudinal data from two studies. It said that disability was associated with a higher risk of being bullied for both children and teenagers, and the association remained when other characteristics known to influence bullying were taken into account.
Source: Stella Chatzitheochari, Samantha Parsons, and Lucinda Platt, Bullying Experiences among Disabled Children and Young People in England: Evidence from two longitudinal studies, Working paper 14-11, Institute of Education (University of London)
Links: Paper | Summary | IoE press release | CLS press release | BBC report
Date: 2014-Jun
A report examined the transitions of young people with complex physical health needs as they moved between children's and adults' health services. It said that there were examples of good practice, including consistency in staffing, the provision of adolescent clinics, good communication between the respective parties, and good information about the process. However, the report said that young people did not always receive the necessary care and support during the transition, and that it was made more difficult by issues such as a lack of early planning, insufficient consideration of the needs of carers, and failures to agree over responsibilities for funding. The report made recommendations.
Source: From the Pond into the Sea: Children's transition to adult health services, Care Quality Commission
Links: Report | Summary | CQC press release
Date: 2014-Jun
The inspectorate for education and children's services began consultation on a revised framework for the inspection of residential holiday schemes in England for children with disabilities. The consultation would close on 24 June 2014.
Source: Inspection of Residential Holiday Schemes for Disabled Children, HMI 140026, Office for Standards in Education, Children's Services and Skills
Links: Consultation document
Date: 2014-May
A report said that Scottish schools and local authorities did not adequately plan for the needs of children with disabilities, as required by the Education (Scotland) Act 2002. The report called on the government to be more directive in its guidance, for a greater focus on deliverable strategies, better consultation, and physical changes to school premises to improve accessibility.
Source: Excluded: How Scotland's schools are failing to plan for disabled pupils' needs, Scottish Disability Equality Forum
Links: Report | SDEF comment
Date: 2014-Apr
A report examined the evidence on the possible negative impact on children and adolescents who were the siblings of children with intellectual disabilities or autism. It said that existing evidence suggested that only a small number of siblings might be adversely affected, but the evidence that focused on siblings was limited and there were many unanswered questions. The report recommended further research.
Source: Richard Hastings, Children and Adolescents Who Are the Siblings of Children with Intellectual Disabilities or Autism: Research evidence, Sibs
Links: Report | University of Warwick press release
Date: 2014-Apr
A report examined the relationship between disabled children and child protection practice in Scotland. It said that children with disabilities were more likely to be abused than their non-disabled peers, but abuse sometimes remained undetected. The report said there was both a lack of relevant training about child protection, and variability in the applied thresholds for action. It concluded that consideration needed to be given to how best to adapt practice, assessment, and intervention for children with a range of impairments, and that more needed to be done to ensure that their voices were heard and included within the formal system.
Source: Julie Taylor, Kirsten Stalker, Deborah Fry, and Alasdair Stewart, Disabled Children and Child Protection in Scotland: An investigation into the relationship between professional practice, child protection and disability, Scottish Government
Date: 2014-Apr
A government department published reports that evaluated progress on the special educational needs and disability (SEND) pathfinder programme in England, and examined the pathfinders' readiness to implement key reforms (related to the Children and Families Bill) to provide better support to children and young people and their families. The second report also reviewed the effectiveness of the pathfinder champions.
Source 1: Tarran Macmillan, Rhian Spivack, Graham Thom, and Meera Craston, The SEN and Disability Pathfinder Programme Evaluation: Progress and indicative costs of the reforms, Research Report RR330, Department for Education
Source 2: Kathryn Hill, Meera Craston, Kerry Daff, and Tarran Macmillan, The SEN and Disability Pathfinder Programme Evaluation: Readiness for reform and effectiveness of Pathfinder Champions, Research Report RR329, Department for Education
Date: 2014-Mar
The Northern Ireland Assembly published a cross-departmental strategy and action plan for people with autism, outlining a whole of life approach for service provision.
Source: The Autism Strategy (2013 2020) and Action Plan (2013 2016), Northern Ireland Executive
Links: Report | NIE press release
Date: 2014-Feb
A paper provided an overview of findings from research into the reading and dyslexia of oral deaf children. It said that half of the children in the study had reading difficulties and, although the research had identified deaf children with dyslexic profiles, not all of those children were among the poorest readers. The paper called for specialist and individualized intervention along similar lines to that currently offered to hearing children with dyslexia.
Source: Rosalind Herman, Penny Roy, and Fiona Kyle, Reading, Dyslexia and Oral Deaf Children: From research to practice, City University, London
Links: Paper | Nuffield Foundation press release | BBC report
Date: 2014-Feb
A government minister announced an additional £30 million of funding to recruit and train 1800 independent supporters to assist parents through the new special educational needs process that would arise following the enactment of proposals in the Children and Families Bill. The supporters would be drawn from independent voluntary, community and private organizations and would be available by September 2014 to assist parents. The Council for Disabled Children would now trial the recruitment and training.
Source: Press release 7 January 2014, Department for Education
Links: DE press release | CDC press release | CDC Q&A | Action for Children press release
Date: 2014-Jan
A report evaluated keyworking in relation to the Education, Health and Care (EHC) assessment and planning process, as part of the overall evaluation of the Special Educational Needs and Disability (SEND) Pathfinder Programme. The EHC was designed to lead to a single, co-ordinated plan for education, health and care and the report said that keyworking during this phase needed to cover four main areas: co-ordination; planning and assessment; information and signposting; and emotional and practical support. It said that co-producing the EHC Plan with families could be time-consuming and emotionally demanding, and that co-ordinating provision across different professionals and service areas required strong organizational skills and the authority and ability to influence. The report said that different staffing models had been adopted in the five pathfinder areas. It outlined issues around training and development, and said that longer term plans for key working needed to consider how to deliver ongoing support.
Source: Kathryn Hill, Meera Craston, Kerry Daff, and Graham Thom, Special Educational Needs and Disability Pathfinder Programme Evaluation Thematic Report: Key working and workforce development (Pt 1), Research Report 326A, Department for Education
Links: Report
Date: 2014-Jan
A report evaluated the Education, Health and Care (EHC) Planning Pathway for families that were new to the special educational needs system, as part of the overall evaluation of the Special Educational Needs and Disability (SEND) Pathfinder Programme. The EHC was designed to lead to a single, co-ordinated plan for education, health and care and the report said that the new processes could lead to better quality plans, as they enabled professionals to develop a more comprehensive understanding of the child or young person. The five pathfinder areas appeared to retain their previous approaches to eligibility, but the report noted three main differences between the new method and the former SEN statementing process: more emphasis on gathering information from across services at the point of referral; greater involvement of the family at assessment and planning phases; and a more family centred plan with greater focus on outcomes. The report noted the key challenges and proposed solutions.
Source: Rhian Spivack, Meera Craston, Graham Thom, and Christopher Carr, Special Educational Needs and Disability Pathfinder Programme Evaluation Thematic Report: The Education, Health and Care (EHC) Planning Pathway for families that are new to the SEN system, Research Report 326B, Department for Education
Links: Report
Date: 2014-Jan