Disabilities of Sight Course Institute of Education 8 October 2009

1. Disabilities of Sight CourseInstitute of Education8 October 2009 What research tells us about the population of blind and partially sighted children and young people Sue Keil Research Officer RNIB

2. Prevalence and characteristics of B&PS children and YP • Sources of data • Definitions and criteria • Prevalence and population estimates • Additional disabilities and/or SEN • Where educated • In conclusion - what does this tell us?

3. Sources of data • Administrative data: • B&PS registration data • DCSF national pupil datasets (NPD) • Survey data: • NFER/RNIB survey of VI services 2007 • OPCS Disabled children in Britain survey 1989 • Epidemiological studies

4. Definitions and criteria • BPS registration data: from VA <3/60 with full visual field to VA up to 6/18 with sig field loss • DCSF NPDs: Statement or SAP • NFER/RNIB survey: pupils known to VI service (different VI service policies?) • Disabled children in Britain survey: sift questions then ‘not seeing well enough’ to see… • Epidemiological studies: VA measures (VA<6/18), behavioural measures indicating severe VI or blindness

5. Prevalence and population estimates: administrative data • Registration as BPS in England 2008: • Reg’d blind aged 0-4: 805 • Reg’d PS aged 0-4: 700 • Reg’d blind aged 5-17: 3,975 • Reg’d PS aged 5-17: 5,140 • Total blind: 4,780 • Total PS: 5,840 • Total blind and PS: 10,620

6. Prevalence and population estimates: administrative data • DCSF School Census data for England, January 2007: • Pupils with statement or on School Action Plus • Ages 5 - 16 • VI primary SEN: 8,100 • VI primary and secondary SEN: 11,400

7. Prevalence and population estimates: survey data • RNIB/NFER survey of VI services in England 2007 • Population estimates (extrapolated) • Ages 0 – 4 years: 4,100 • Ages 5 to 11 years: 10,000 • Ages 12 to 16 years: 7,800 • Total aged 5 to 16 years: 18,000 • Total aged 0 to 16 years: 22,000 • Prevalence of 2 children per 1,000 (0.2%) • OPCS disabled children in Britain survey also estimated 22,000 in GB in 1985 (0.2% prevalence)

8. Prevalence and population estimates: epidemiological data • Severe VI and blindness in the UK(Rahi and Cable, 2003) • Ages 0 – 15 • Age 0 – 11 months: incidence of 4.04 per 10,000 (0.04%) • Age 0 – 15 years: cumulative incidence of 5.90 per 10,000 • Childhood vision impairment in Liverpool(Rogers, 1996) • Ages 0-16 • Prevalence of 1.81 per 1,000 (0.18%) • Community based survey of children with VI in the S and E Belfast Health Trust area in Northern Ireland(Flanagan et al, 2003) • Ages 0 – 18 • Prevalence of 1.6 per 1,000 (0.16%)

9. Prevalence and population estimates: summary • Wide range of prevalence and population estimates depending on who is collecting the data, method, criteria for inclusion • Range is from 6 per 10,000 with most severe VI to estimate of 20 per 10,000 • Higher estimate gives population estimate of 22,000 in England and 25,000 in UK ages 0 - 16 • RNIB/NFER estimate of population of B&PS pupils exceeds DFCS figures by approx 6,500

10. Additional disabilities and/or SEN: evidence from surveys • OPCS disabled children in Britain survey: • Reanalysed by Gordon et al (2000) • Children with VI tended to cluster at the 2 extremes of children with mildest and the most severe disabilities • Highest proportion in Cluster 11: Children with Multiple and Very Severe Disabilities • 36% in Cluster 11 had VI with most having severe VI or blindness • NFER/RNIB survey: • 39% were reported as having additional disabilities • The 39% may be an under-estimate as disability details were not provided for 18% of children • True estimate may be 47%

11. Additional disabilities and/or SEN: evidence from medical studies • Rahi and Cable (2003): • 77% had non-ophthalmic disorders or impairments • Increase in untreatable visual disorders including CVI • Proportionally children with severe VI now have additional – often very complex – disabilities • Rogers (1996): • 65% had additional and usually multiple pathology • 56% had learning disabilities • 32% had CVI • Flanagan et al (2003): • 79% had additional medical problems • 43% global developmental delay/SLD • 21% mild to moderate learning disabilities

12. Additional disabilities: risk factors • Rahi and Cable (2003): • Very premature and low birth weight babies at particular risk of VI and also of CVI • Increased rate in children from ethnic minorities • Association with social and economic deprivation

13. Additional disabilities and/or SEN: summary • Depending on study and definitions used, between 39% and 79% of children with VI have additional health problems and/or disabilities • Around 50% appear to have learning difficulties • Children with the most severe VI are much more likely than those with less severe VI to have additional disabilities • Children with additional disabilities are less likely than those with VI only to be registered as blind or partially sighted • Official DCSF figures significantly under represent the number of pupils with learning disabilities and VI • Particular risk factors for VI and additional complex needs are: prematurity and very low birth weight, belonging to ethnic minority (particularly South Asian), being socially and economically disadvantaged • Higher prevalence of VI in children with LD – those with SLD/PMLD most at risk

14. Educational setting (RNIB/NFER 2007)

15. Educational setting: summary of key findings • Majority of B&PS pupils are educated in mainstream schools • Only 3% of pupils appear to be educated outside their home LA (could be 4.5%) • 69% of pupils educated outside their home LA had additional disabilities • Pupils educated outside LA more likely to be in specialist provision

16. In conclusion, what does this tell us? • Wide range of prevalence and population estimates depending on who is collecting the data, method, criteria for inclusion • Very high proportion of B&PS children and YP have additional disabilities and/or SEN • High proportion have learning disabilities • High proportion of children with LD have VI • B&PS pupils with other SEN under-represented in official DCSF statistics • Pupils with other SEN (particularly MDVI) more likely to be educated outside LA

17. Conclusion

18. References • Flanagan N M, Jackson A J and Hill A E (2003) ‘Visual impairment in childhood: insights from a community-based survey’ Child: Care, Health and Development 2003, Vol 29, Pt 6, pp 493 - 499 • Gordon D, Parker R and Loughran F with Heslop P (2000) Disabled children in Britain: A re-analysis of the OPCS disability surveys. London: The Stationery Office • Morris M and Smith P (2008) Educational provision for blind and partially sighted children and young people in Britain: 2007. National Foundation for Educational Research (NFER) for RNIB • Registration data for England: http://www.ic.nhs.uk/statistics-and-data-collections/social-care/adult-social-care-information/people-registered-as-blind-and-partially-sighted-2008-england • Rahi J and Cable N (2003) 'Severe visual impairment and blindness in children in the UK' The Lancet, Vol 362, Oct 25, 2003 • Rogers M (1996) ‘Vision impairment in Liverpool: prevalence and morbidity’ Archives of Disease in Childhood, 74: 299 - 303

19. RNIB research planned for 2009/10 • Educational attainment • Accessibility of public examinations • Post-school transition from RNIB Rushton school and children’s home • Evaluation of the Developmental Journal for babies and children with VI ages 0 – 3 • Longitudinal transition study from age 14

20. Where to find out more about RNIB research • RNIB research: http://rnib.org.uk/aboutus/Research/Pages/research.aspx • RNIB research library: http://rnib.org.uk/aboutus/Research/researchlibrary/Pages/library.aspx • Contact Sue Keil: Sue.Keil@rnib.org.uk