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Local authorities and the education of young people with sickle cell disorders (SCD) in England

Local authorities and the education of young people with sickle cell disorders (SCD) in England. Simon Dyson. Sickle Cell and Education Lecture 2 of 6. Funding RES-000-23-1486. Research Team. Dr Hala Abuateya, Unit for the Social Study of Thalassaemia and Sickle Cell, Research Fellow

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Local authorities and the education of young people with sickle cell disorders (SCD) in England

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  1. Local authorities and the education of young people with sickle cell disorders (SCD) in England Simon Dyson Sickle Cell and Education Lecture 2 of 6

  2. Funding RES-000-23-1486.

  3. Research Team Dr Hala Abuateya, Unit for the Social Study of Thalassaemia and Sickle Cell, Research Fellow Professor Karl Atkin, University of York Professor Lorraine Culley, De Montfort University, Leicester Professor Simon Dyson, Unit for the Social Study of Thalassaemia and Sickle Cell, Project Director Dr Sue Dyson, De Montfort University, Leicester Dr Jack Demaine, Loughborough University

  4. The Research: Phases 1-2 [1] Review of Secondary Sources [2] Surveys: [i] 150 education authorities and policies [ii] 500 young people under 25 about their educational experiences [iii] 200 schools attended by pupils with SCD.

  5. The Research: Phases 3-5 [3] 50 depth, tape-recorded interviews [4] 8-10 case studies with completion of year-long diaries and follow-up interviews. [5] Policy Development Workshops at five regional seminars

  6. Survey of Local Authorities • February-April 2007 • 107 replied from 150

  7. Replies by Local Authority Type

  8. Responding Officer

  9. Survey of Local Authorities • Who to contact in local authority Children’s and Young Person’s Department • 92 different job titles among the 107 replies.

  10. Local Authorities with Policies on..

  11. Should have Statement of Special Educational Needs

  12. Department for Children, Schools and Families (DCSF) Spokesperson • SCD was not on its own regarded by the DCSF as a special educational needs (SEN) issue • That advice on drawing up an individual health care plan (IHCP) was available within guidance issued • Monies for ethnic minority pupils were based on “under achieving minority ethnic pupils and those whose first language is other than English”

  13. Should have Statement of Special Educational Needs

  14. Should have Individual Health Care Plan (IHCP)

  15. Should have Individual Health Care Plan (IHCP)

  16. Number of Children with SCD in Local Authorities, England, 2007

  17. Number of Children with SCD in Local Authorities, England, 2007 • Most LAs do not know numbers of children with SCD under their jurisdiction • Most do not know numbers with SEN statements or IHCP despite majority stating that these should be given to children as a matter of course • 394/5000 = 7.9% children with SCD “visible” in policy terms within education system

  18. Number of Children with SCD in Local Authorities, England, 2007

  19. Number of Children with SCD in Local Authorities, England, 2007 • LA ranked 90th an area designated “high prevalence” by NHS Sickle Cell and Thalassaemia Screening Programme • LA ranked 122nd still reported five children with SCD • None of the ten local authorities with highest number of Black (African/Caribbean/Other) reported numbers

  20. Conclusion • Young people with SCD currently invisible in terms of education policy • Where good practice exists it does so as individual acts of kindness and remains impossible to share with teachers and young people who remain unknown • Where bad practice exists: • No general good practice to learn form, • Risks making problems a problem of individual character of parent/young person with SCD • No accountability on part of local authorities/schools

  21. Publication • Dyson, SM; Abuateya, H; Atkin, K; Culley, LA; Dyson, SE; and Rowley, DT (2008) Local authorities and the education of young people with sickle cell disorders (SCD) in England International Studies in Sociology of Education 18 (1) 47-60. [ISSN 0962-1214] http://dx.doi.org/10.1080/09620210802196168

  22. Further Information For further information on this research programme, please visit: http://www.sicklecelleducation.com End of presentation

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