VIEW is the professional organisation representing the education workforce that supports children and young people with vision impairment (VI).
Over the past few years, VIEW has observed with increasing concern how a combination of cuts in local authority budgets, changes in SEN funding, and education policy have led to a crisis in specialist educational provision for children and young people with VI. Childhood vision impairment is a disability that has a significant effect on development and learning, requiring specialist support to teach fundamental skills that enable children to learn, socialise, look after themselves, and get around independently. With the right support, children and young people with VI have the potential to achieve at the same level as their peers and to lead successful, independent lives. The current system is failing this vulnerable group. A generation of vision impaired young people is at risk of poor outcomes that will seriously undermine their ability to become independent adults.
In this paper, VIEW sets out, with supporting evidence, the key issues and puts forward some proposed solutions. Although in this paper we have focused on the policy and provision context in England, many of the key issues apply to Wales, Scotland and Northern Ireland as well.
2. What characterises a vision impaired child?
• Two in every 1,000 (0.2 per cent) children and young people up to the age of 25 in the UK are estimated to have vision impairment. This is based on a visual acuity (VA) threshold of 6/18 and does not include children with ‘mild’ VI. Some of these children may have additional difficulties with their vision that have implications for learning and development, particularly when combined with other disabilities/special educational needs (SEN), for example, eye movement problems, or problems with the way that the brain interprets visual information (1)
• There is a much higher prevalence (10.5%) of VI among disabled children (2). In the population of children with learning disabilities (LD) the estimated prevalence is 5.6%, with the risk of VI increasing in line with severity of LD (3,4).
• Approximately 50% of vision impaired children have additional SEND. Many have very complex needs in addition to their VI.
• Blindness or a severe vision impairment affects an individual’s ability to acquire and carry out a wide range of skills and is known to have a major effect on development. It is defined by many child health professionals as a neurodevelopmental disorder, for example:
“Although childhood vision impairment (VI) is often grouped with hearing impairment as a sensory disorder, severe early-onset VI is more appropriately considered as a major neurodevelopmental disorder, given its impact on multiple developmental processes” (5). It is evident from this definition that the implications for development of a severe or profound VI, relate to much more than visual loss alone, necessitating a multi-disciplinary approach to intervention that involves a range of professionals from health, education and social care.
3. Specialist provision
The nature and quality of VI provision in England and the UK is highly variable across local authorities as well as across individual educational settings, leading to a postcode lottery of specialist support. From health to education referral following initial diagnosis, through early years, school, and post-school support, there are problems at every stage of the pathway. While there is evidence of excellent practice leading to positive outcomes for children and young people, the challenges faced by schools and specialist services are making it increasingly difficult to maintain high quality provision.
3.1 Early childhood intervention and referral from health to education
What do children and families need?
Babies and young children with VI need to be referred as soon as possible after diagnosis for specialist support – usually this is provided by a qualified teacher of children and young people with VI (QTVI). There is strong research evidence to support the importance of early intervention from a practitioner with specialist knowledge of early years development of babies and children with VI to ensure optimal visual and developmental progress. This evidence highlights the developmental vulnerabilities of babies and young children with severe VI, in motor, cognitive, language, social and attentional domains, which include the risk of developmental setback/regression (See 5 for refs). It is evident that skills learnt in appropriate neurodevelopmental timeframes, when the brain is primed for learning specific skills, become embedded for life and lay the foundations for all future learning in these specific areas. While the importance of early intervention cannot be over-emphasised, it is important to remember that vision impairment is a lifelong disability. Ongoing specialist support is therefore needed throughout childhood to enable children and young people to continue building upon these early foundations and to learn and develop the skills and understanding to achieve age appropriate outcomes in line with their sighted peers.
What is going wrong?
Despite the overwhelming evidence about the importance of early specialist intervention for babies and young children with VI and their families, we know that there are still lengthy delays in referral for some babies and children, with consequent delays for early childhood intervention.
• While the majority (86%) of LAs have an established arrangement with health for referring babies and children to the VI service, a few LAs appear to have no formal referral arrangements with health (6)
• Even where there is a local arrangement for referring children from health to education, referrals can still be delayed or fail to be made because:
o The child is not being treated in their local hospital but, in a hospital where there is no referral arrangement with the VI service in his/her home LA, or in a specialist hospital in another area. Eye Clinic Liaison Officers (ECLOs) in these centres have reported difficulties in obtaining the contact details of the VI service in out of area LAs. While this information should be on the local authority’s Local Offer page, in many LAs this information is either extremely difficult to find, or only gives the contact details of a generic early years or SEND service, which can lead to further delays (7)
o If the child is being treated by a consultant ophthalmologist who usually sees adults, or by a paediatrician who is not an eye specialist, the doctor may not be aware of the need to refer to the VI service (8)
• In addition, to the above concerns about delays in referral, anecdotal evidence suggests that there is a trend in some LAs towards steering babies and young children with VI towards a generic early years service, rather than to the VI service.
What are the implications for babies and young children and their families?
• Given the importance of early childhood intervention, babies and young children who do not receive timely, specialist support, are at greater risk of poor developmental outcomes, which are likely to seriously impede their later social and cognitive development.
• In 2017, only 47% of children with VI as their primary SEN were assessed as having a ‘good level of development’ at the Early Years Foundation Stage (EYFS), compared with 71% of all pupils. 45% of pupils with VI achieved at least the expected standard in all 17 Early Learning Goals (ELGs) compared 69% of all pupils (9, 10).
• A recent major, UK research study carried out by a team at Great Ormond Street hospital (several papers are awaiting publication) has found further, detailed evidence of the impact of VI on development. Findings from this research are being used to update an intervention programme that provides a systematic framework for tracking and supporting vision and development in babies and toddlers. The findings have also been used to inform new online training in early developmental support from Health Education England/Royal College of Paediatric Child Health and the release of a new edition of the Developmental Journal for Babies and Children with Visual Impairment for use by health and education professionals (11).
3.2 The school years
What do children and young people need?
Children and young people with VI belong to a population that is relatively small numerically, highly diverse in terms of range of abilities and needs, and which requires a high level of specialist provision to access the academic curriculum and also to acquire social, everyday living and mobility skills to enable them to be fully included with their peers and progress towards independent adulthood. The specialist skills that children and young people with VI need to be taught, come under what is known in the UK as the ‘UK additional curriculum’.
The UK additional curriculum has 8 outcome areas: learning to access; use of equipment; independence and negotiation skills; participation; meeting others; getting around; looking after him/herself; and life after school (12). While these skills are implicit in the curriculum for sighted children and are often learned by observation, they need to be taught explicitly to children and young people with VI who are unable to acquire new skills and understanding through incidental learning.
Children and young people with VI should be assessed and supported by a qualified teacher of children and young people with VI (QTVI), and a registered qualified habilitation specialist (RQHS) or equivalent. Support may also be provided, under the supervision of a QTVI, by a teaching assistant (TA), resource technician, and ICT specialist. Between them these professionals should support mainstream teachers to adopt an inclusive teaching approach while also developing the specialist skills of individual children and young people with VI to participate on equal terms with their sighted peers.
What is going wrong?
Over the past few years, specialist educational provision for children and young people with VI has been seriously undermined. This is due to a combination of: cuts in local authority budgets; changes in SEN funding requiring LAs to delegate most of the central SEN budget to schools; national education policies that have given greater autonomy to schools, and that prioritise academic attainment as the key outcome measure on which schools are judged; and a SEND Code of Practice that allows individual local authorities to decide how specialist provision will be made in their area, as opposed to having national standards. Consequently, as the conclusion to the research briefing of findings from the 2017 RNIB FOI survey observed, this has led to:
“….the system of support for children and young people with vision impairment in England [is] disintegrating. We are seeing an increasingly complicated, fragmented landscape of specialist educational provision in England. As the number children and young people with vision impairment identified as needing support grows, the service provision is shrinking… Vision impairment services are under sustained pressure and in a constant state of uncertainty about the future”. (6)
• VI education services are increasingly becoming absorbed into larger services for children and young people with a range of SEND (6). In particular. this raises concerns about professional management of QTVIs (in around a third of LAs the person with strategic management of the VI service is not a QTVI) (7)
• Many VI services are losing QTVIs while their caseloads are increasing in size and complexity
• In order to cope with the demands of fewer staff and more complex caseloads, in many LAs the threshold for specialist support has been raised and/or support reduced for some groups of children. Around one in five LAs reduced VI service support to children and young people with VI between 2016 and 2017 due to lack of staff capacity (6)
• Children with ‘mild’ or moderate levels of VI are the most at risk of being denied specialist support from a QTVI, because they no longer meet the VI service threshold, or the school is unwilling/unable to meet the costs from its SEN budget
• The vast majority of TAs out of a workforce of just over 2,000 are recruited and employed directly by schools (6), and most of these have little or no supervision from a QTVI. Very little is known about what specialist training (if any) they receive and there is no national standard for the training or regulation of TAs who support pupils with VI. There is concern that without proper training, many TAs may ‘over-support’ pupils with VI, which creates dependency and prevents the pupil from gaining the independent learning skills that will be crucial for them to succeed in post-school settings
• Because schools are judged on their pupils’ academic attainment, the academic curriculum takes precedence over the ‘additional curriculum’, which can then be overlooked or squeezed for time in an already overcrowded timetable.
• While it might be argued that having an EHCP is a way of ensuring that a child or young person with VI has appropriate outcomes and support for meeting them identified, not all LAs consider VI (or even, in some cases, blindness) to be a ‘complex’ need deserving of an EHCP. Even where an EHCP assessment is carried out, in many LAs this is done by an SEN officer with no VI knowledge, and the QTVI or other VI professionals have minimal input. The RNIB FOI survey found that 37% of LAs did not make specific reference to the child’s vision impairment as a factor that would be taken into account when deciding whether or not to assess a child with VI for an EHCP (6)
What are the outcomes for children and young people with VI?
• Pupils with VI as their primary SEN (almost three quarters of whom have VI recorded as their only SEN) are the highest attaining of the SEN groups, (9, 14,15). Nevertheless, pupils with VI are significantly behind their peers in terms of academic attainment:
o At Key Stage 2, 46% of pupils with VI as their primary SEN in state funded schools achieved the expected, or above the expected standard in reading, writing and maths compared to 70% of all pupils (14). At the end of Key Stage 4, 48.9% of students with VI as their primary SEN gained GCSE grade 4/C or above in English and Maths in 2016/17 compared to 63.9% of all pupils (15).
• Many parents and professionals express concern about the psychological and emotional wellbeing of children and young people with VI. There is evidence that at the age of 11, children with VI were less likely than other children to feel that they were able to do things as well as others (16). Such negative comparisons can affect a child or young person’s self concept. Lower quality of life has been reported in young people with VI compared to their peers (17), and there is evidence that children with VI are at higher risk of psychosocial disorders compared with fully sighted children (18)
• In a longitudinal study that has been tracking around 80 young people with VI over an eight year period following transition from school, it has been found that young people who do not have the opportunity to access the wider, additional curriculum while at school, are much less likely to make a successful transition into further and higher education and employment, and thus to independent adulthood. A lack of independent mobility, living, learning and self advocacy skills makes it far harder for even high attaining young people with VI to deal with institutional failings in FE and HE and negative employer attitudes (19, 20)
• While young people with VI appear to remain in education for longer than their peers (according to the Labour Force Survey, 36.2% of 16-25 year-olds were students compared with 25.8% of all 16-25 year olds (21)), this extra time in education is not necessarily being used productively. There is evidence from the Birmingham university longitudinal transitions research, of young people with VI in further education ‘churning’, i.e. repeating years in college, or repeatedly taking courses at the same level (or even lower levels) and failing to progress (19)
• The employment rates for young people with VI aged 16-25 are also lower than those of their age peers (25.6% vs 54.0%), and the difference is not accounted for by the higher proportion of VI students in education. Overall, only 62% of young people with VI aged 16-25 were in education or employment compared with 80% of the general population of 16-25 year olds (21)
• These findings are supported by evidence from other countries including the USA (22,23,24)
• Poor levels of employment reinforce the risk of a negative self image on the part of young people with VI who can often feel they have failed in comparison to their non-disabled peers. It can also be seen as a poor return on the considerable additional cost of educating children and young people with VI if they reach adulthood without the qualifications, skills and confidence which they need to live and work independently.
What can be done to solve the problem?
VIEW is calling for a comprehensive review of the current system of provision for children and young people with VI, on the basis that the current system is no longer fit for purpose. This review should include discussion of the following key elements:
• The major developmental impact of childhood VI should be officially recognised in line with improved services for children with a hearing impairment (HI) following the roll out of the universal newborn hearing screening programme in 2006, and resources and funding provided for intensive, specialist intervention for all babies and early years children with VI and their families.
• There should be recognition that vision impairment is a lifelong disability and that proactive support from VI specialists is required throughout childhood and early adulthood. It should not be assumed that support is only needed in response to a failure to make good progress against a narrow range of academic outcomes
• Changes should be made to the way in which VI services are funded, so that ring-fenced SEN funding is retained by the LA to cover the costs of a central, fully staffed and resourced VI service
• There should be recognition at national level of the importance of the additional curriculum for children and young people with VI and entitlement to specialist support to meet the 8 specified outcomes
• There should be recognition of the key role played by qualified teachers of children and young people with VI (QTVI), and registered qualified habilitation specialists (RQHS), and a commitment to both the quantity and the quality of these professional groups through appropriately funded training and continuous professional development (CPD)
• All Teaching Assistants working with children and young people with severe vision impairment should have access to specialist accredited training.
6 June 2018
1. Vision UK (2018) Key facts about vision impairment in children and young people. https://www.visionuk.org.uk
2. Salt A and Sargent J (2014) ‘Common visual problems in children with disability’. Archives of Diseases in Childhood 2014;0:1–6.
3. Nielsen LS, Skov L, Jensen H (2007) ‘Visual dysfunctions and ocular disorders in children with developmental delay. I. prevalence, diagnoses and aetiology of visual impairment’. Acta Ophthalmol Scand 2007; 85: 149–56
4. Emerson E and Robertson J (2011) The estimated prevalence of visual impairment among people with learning disabilities in the UK. CeDR, Lancaster University/Learning Disabilities Observatory report for RNIB and SeeAbility
5. Keil S, Fielder A and Sargent J (2017) ‘Management of children and young people with vision impairment: diagnosis, developmental challenges and outcomes”. Archives of Diseases in Childhood 2017;102:566–571 (p566)
6. Flynn K (2018)) Freedom of Information (FOI) questions on local authority education provision for children and young people with vision impairment in England: 2017. Research briefing RNIB https://www.rnib.org.uk/campaigning-current-campaigns-children-and-education/protecting-local-vision-services-children-and
7. VIEW (2018) The RNIB/VIEW VI service Local Offer spreadsheet https://viewweb.org.uk/vi-education-provision-local-offers-england-2017/
8. Boyce T (2015) Ensuring support: certification and registration of children and young people with vision impairment in England. RNIB. http://www.rnib.org.uk/knowledge-and-research-hub-research-reports/children-and-young-people-research/certification-registration-children-young-people
9. DfE (2017a) DfE (27 July, 2017) Special educational needs in England: January 2017 https://www.gov.uk/government/statistics/special-educational-needs-in-england-january-2017
10. DfE (2017b) (19 October, 2017) Early years foundation stage profile results: 2016 to 2017. Additional tables by pupil characteristics: SFR60/2017 https://www.gov.uk/government/statistics/early-years-foundation-stage-profile-results-2016-to-2017
11. Health Education England/Royal College of Paediatric Child Health (2017) Healthy Child Programme Early Developmental Support: https://www.rcpch.ac.uk/training-examinations/education/healthy-child-programme-0-18 and Developmental Journal for Babies and Young Children with Visual Impairment (DJVI) Professional Set (2018) https://xip.uclb.com/i/healthcare_tools/DJVI_professional.html
12. NatSIP (2016) Learner outcomes framework for VI children and young people https://www.natsip.org.uk/doc-library-login/suporting-the-si-workforce/learner-outcomes-framework-for-vi-children-and-young-people/1070-report-learner-outcomes-framework-for-vi-children-and-young-people
13. Keil (2017b) Summary of DfE official data on children and young people with vision impairment in England 2017. Briefing 1: Children and young people whose primary or secondary SEN was vision impairment. VIEW https://viewweb.org.uk/dfe-official-data-children-young-people-vision-impairment/
14. DfE (2017c) (14 December, 2017) National curriculum assessments: key stage 2, 2017 (revised). National tables: SFR69/2017. https://www.gov.uk/government/statistics/national-curriculum-assessments-key-stage-2-2017-revised
15. DfE (2018) Revised GCSE and equivalent results in England: 2016 to 2017. https://www.gov.uk/government/statistics/revised-gcse-and-equivalent-results-in-england-2016-to-2017
16. Harris J, Keil S, Lord C and Lloyd C (2014) Sight impairment at age eleven. Secondary analysis of the Millennium Cohort Survey. RLSB, RNIB and NatCEN
17. Chadha RK, Subramanian A (2011) ‘The effect of visual impairment on the quality of life of children aged 3–16 years’. Br J Ophthalmol 2011;95:642–5.
18. Harris J, Lord C (2016) ‘Mental health of sighted and vision impaired children aged 11years: a secondary analysis of data from the Millennium Cohort Study’. Dev Med Child Neurol 2016;58:74–9.
19. Hewett, R, Douglas G and Keil S (2016) Transition to adulthood. Final summary report for project “Longitudinal study of transitions experiences of blind and partially sighted young people (Phase 2)”. VICTAR, University of Birmingham report for the Nuffield Foundation
20. Hewett R, Douglas G and Keil (2017) Reflections of Transition Experiences by Young People with Visual Impairments aged 19-22: Technical report of findings to April 2016. VICTAR, University of Birmingham report for the Thomas Pocklington Trust
21. Hewett R (2016) Investigation of data relating to blind and partially sighted people in the Quarterly Labour Force Survey: October 2012 – September 2015. VICTAR, University of Birmingham report for RNIB
22. Capella-McDonnall, M. (2005). Predictors of competitive employment for blind and visually impaired consumers of vocational rehabilitation services. Journal of Visual Impairment & Blindness, 99(5)
23. Wolffe, K., & Kelly, S. (2011). Instruction in areas of the Expanded Core Curriculum linked to transition outcomes for students with visual impairments. Journal of Visual Impairment & Blindness, 105, 340-349.
24. Wolffe K (2017) Preparing children with vision impairment for success. RNIB Insight Online: http://www.rnib.org.uk/insight-online/prepare-children-vision-impairment-career-success