local authorities and the education of young people with sickle cell disorders (scd) in england...
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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
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
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.
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
Survey of Local Authorities
February-April 2007 107 replied from 150
Replies by Local Authority Type
Replied Declined Total Response Rate
Met Boro 28 8 36 78%
County 25 9 34 74%
London 23 10 33 70%
Unitary 31 16 47 66%
Total 107 43 150 71%
Responding Officer
Type of Role Reported Total
Special Needs/Inclusion 42
Educational Psychology 7
Medical Needs/Physical Needs 7
Education Officer (Generic/Management Title) 22
Curriculum-Related Role 9
Individual head teacher 1
Nurse/School Nurse 2
Multiple 3
Other 13
Not Stated 1
TOTAL 107
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.
Local Authorities with Policies on..
Total
Asthma 28
Cystic Fibrosis 7
Diabetes 23
Epilepsy 28
Haemophilia 1
Sickle Cell 2
Should have Statement of Special Educational Needs
Number
Yes 77
No 17
Depends 4
No Reply 9
TOTAL 107
Department for Children, Schools and Families (DCSF) Spokesperson
(1) SCD was not on its own regarded by the DCSF as a special educational needs (SEN) issue
(2) That advice on drawing up an individual health care plan (IHCP) was available within guidance issued
(3) Monies for ethnic minority pupils were based on “under achieving minority ethnic pupils and those whose first language is other than English”
Should have Statement of Special Educational Needs
Number
Yes 77
No 17
Depends 4
No Reply 9
TOTAL 107
Able to State Numbers with SEN Statement 3
Should have Individual Health Care Plan (IHCP)
Number
Yes 91
No 6
Depends 2
No Reply 7
TOTAL 107
Should have Individual Health Care Plan (IHCP)
Number
Yes 91
No 6
Depends 2
No Reply 7
TOTAL 107
Able to State Numbers with IHCP 14
Number of Children with SCD in Local Authorities, England, 2007
Number of Children Number of Authorities
Not Able to State 92
None 5
Children with Sickle Cell Disorders.... 1 1
3 1
5 1
7 1
10 1
11 1
20 1
37 1
50 1
250 1
Total Children 394
Total Local Authorities = 107
Number of Children Number of Authorities
Not Able to State ?
92
None 0
5
Children with Sickle Cell Disorders..... 1
1
3 1
5 1
7 1
10 1
11 1
20 1
37 1
50 1
250 1
Total Children 394 Total Local Authorities = 107
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
Number of Children with SCD in Local Authorities, England, 2007
Number of Children Number of Authorities
Not Able to State
None 90th 125th 129th 133rd 146th
Children with Sickle Cell Disorders…. 1 100th
3 120th
5 122nd
7 69th
10 96th
11 17th
20 26th
37 18th
50 21st
250 11th
Number of Children Ranking of Authorities
Not Able to
State ?None
090th 125th 129th 133rd 146th
Children with Sickle Cell Disorders.. …1 100th
3 120th
5 122nd
7 69th
10 96th
11 17th
20 26th
37 18th
50 21st
250 11th
Number of Children Ranking of Authorities
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
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:
(1) No general good practice to learn form, (2) Risks making problems a problem of individual
character of parent/young person with SCD
(3) No accountability on part of local authorities/schools
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
Further Information
For further information on this research programme, please visit:
http://www.sicklecelleducation.com
End of presentation