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

Prevalence and characteristics of B&PS children and YPSources of dataDefinitions and criteriaPrevalence and population estimatesAdditional disabilities and/or SENWhere educatedIn conclusion - what does this tell us?

Sources of dataAdministrative data:

B&PS registration dataDCSF national pupil datasets (NPD)

Survey data:NFER/RNIB survey of VI services 2007OPCS Disabled children in Britain survey

1989Epidemiological studies

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

Prevalence and population estimates: administrative data

Registration as BPS in England 2008:Reg’d blind aged 0-4: 805Reg’d PS aged 0-4: 700Reg’d blind aged 5-17: 3,975Reg’d PS aged 5-17: 5,140Total blind: 4,780Total PS: 5,840

Total blind and PS: 10,620

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

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)

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%)

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

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%

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

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

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

Educational setting (RNIB/NFER 2007)

Educational setting Within LA: rec to Yr 6

Within LA: Yr 7 to Yr 11

Outside LA: rec to Yr 6

Outside LA: Yr 7 to Yr 11

Local mainstream school 71 61 39 27

VI resourced mainstream school 1 4 5 6

Special school for pupils with VI 2 2 24 36

Other special school 25 31 23 17

Other type of school 1 1 8 14

Total children and young people

5886 4367 294 447

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

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

Conclusion

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

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

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