The SEND review: how addressing the vision needs of children with learning disabilities and SEND could provide better outcomes

Introduction

SeeAbility welcomes the opportunity that the SEND review brings and the areas where there is potential for positive change. Generally the green paper consultation is quite ‘light’ on the importance of health in the SEND system. But health outcomes are vital for many children with SEND in terms of wider outcomes and wellbeing, and this is one reason that Education, Health and Care Plans exist for eligible children.

Specifically the word limitations and areas of focus in the consultation do not give the opportunity to talk more holistically about the importance of vision needs of children with learning disabilities and SEND being met. 

If children can make the best use of their vision, and their needs are recognised, it stands to reason that they will feel more included and their wellbeing will improve. Given 80% of learning is estimated to relate to vision, educational outcomes will also improve. 

Our work concentrates on bringing early eye care to children with learning disabilities who are 28 times more at risk of having a sight problem than other children. These sight problems actually increase in prevalence with the severity of learning disability, making vision one of the most common comorbidities that children with learning disabilities will have. 

Most commonly this will be a need for refractive correction (glasses) – often of a high prescription, or a cerebral visual impairment (a brain based problem with vision). Yet these are children who are much less likely to be accessing universal health services, including their right to an annual NHS sight test. 

Perversely the most common place for these children to have routine eye care is in hospital eye clinics (our study put this at 47% of children in special schools). (1) Eye clinics can be a challenging experience for many children with learning disabilities and/or autism especially as they are now the busiest outpatient service in the country at 10 million appointments a year. The challenge is borne out by many children ‘not attending’ their appointments.

Under-reporting of vision needs is common and is reflected in the SEND system

It is also well known that sight problems in this population of children and adults can be easily ‘overshadowed’, misdiagnosed or misattributed to a learning disability. 

Studies of visual impairment in childhood confirm that a significant number of children with visual impairment (over 70%) have an additional ‘non ophthalmic disorder or impairment’. One study found parents and carers only reporting symptoms in 55% of children who manifested them, with evidence that families living in socioeconomically deprived areas even less likely to report concerns. (2)

This follows through when studying the content of EHCPs, which also under-report vision problems. (3)

Data is particularly telling for children in special schools. A number of studies have found ranges of 17% (4)  to 24.9% (5)  to 33% (6)  of children in special schools would have a sight problem so serious it would be a ‘registerable’ visual impairment. 

However DfE EHCP data (7) for special school children gives an impression that visual impairment is not of the same magnitude (although it is recognised that there are limitations in only being able to record two ‘types’ of need). 

For example:

• Just under 3000 of children attending special schools have visual impairment listed as a primary or secondary need. This is just over 2% of the special school population.

Or

• Of nearly 52,000 pupils with moderate, severe and profound and multiple learning disabilities attending special schools, only 3% have visual impairment noted as their secondary need. 

For these reasons we are currently working on ‘model’ EHCPs to illustrate how the NHS Special Schools Eye Care Service (see below) could be reflected in EHCPs and would be pleased to share more information for the SEND strategy work going forward. We have certainly found it difficult to identify where the NHS special schools eye care service should ‘sit’ in EHCPs, as if a child accesses the service in their special school and what the logical sequence is. For example outcomes should really follow provision, but presently this is the other way around. 

NHS Special Schools Eye Care Service

One positive move has been the foundation and rollout of the NHS Special Schools Eye Care Service (NHS SSECS) since 2019. Now operational since April 2021 after the delay caused by the pandemic, this brings targeted eye care to this population of children in school, as four in five children with severe learning disabilities attend special schools. 

Recognising that not all children with a learning disability attend special schools, the NHS England optical programme of work also has a stated intention to address other settings and improve access to community optical practices too, as part of a staged approach to reform. 

The onus is on NHS England, not local authorities or CCGs/ICSs because it is NHS England which is responsible nationally for the ‘general ophthalmic services’ system of funding and contracting for NHS sight tests and glasses, and which for the most part is delivered in optical practices. This has been developed and is being tested as an ‘additional’ service that will have funding and quality checking necessary to support children with more complex needs. 

The expectation is that the NHS SSECS will be open to children in all special schools. Eye care teams matched with local schools will establish a child’s visual status, and for the vast majority, be able meet their clinical needs in school. Having this ‘one stop shop’ of sight testing and glasses dispensing and support, with the results well communicated to parents and teachers, has the potential to support more positive outcomes for the child or young person. The NHS SSECS truly provides the ‘Right Support, Right Place, Right Time’.

The evidence from the early rollout of SSECS to over 70 special schools is already extremely compelling. From this data so far of 4140 sight tests (April 2021 – May 2022)

• Only 15% of children had a GOS ‘high street’ sight test since 2019
• 46% had no history of eye care
• 32.5% had a history of hospital eye care (including ongoing care)
• 43% needed glasses
• Only 2.8% needed referral into secondary care

The main need for referral was actually to the QTVI and specialist teaching service – 12% of children seen needed a referral for this support. However in some areas, it has been very difficult for gain this onward support as many local authorities have been decreasing the number of QTVIs they employ and so this vital support in special schools has been limited. 

We note that DfE is taking steps to increase the capacity of the specialist workforce but no reference is being made in the green paper to the responsibilities of the specialist vision teaching and habilitation (RQSs) workforce so crucial for children with vision needs and this workforce needs to be recognised.

At SeeAbility we recently surveyed parents who receive our service. The response rate was nearly 8% (191 parents) and we have the following data to share:

• 92% of parents happy with the eye care service*
• 93% would recommend our service to other parents*
• 4 in 5 parents now understand more about what their child can see*
• 28% of parents had already seen a difference in their child’s learning and behaviour as a result of wearing glasses*

(*Of those that did not strongly agree or agree, none disagreed)

Some quotes included:

“Very challenging to take disabled kids (autism) to Dr appointments so we normally stick to emergencies. Routine checks, at school, is an amazing service that is a huge benefit.” 

“My son is autistic and things like this can be difficult but he came home telling me all about his eye test and how they used props to help him”

“I am so happy that you are seeing our children in school the whole experience was so much calmer. I have been struggling to get my son's eyes tested for a few years. He has ASD and used to attend hospital but found the whole experience very stressful and traumatic ( particularly the eyedrops). The lady we saw was so patient and because he was in his school environment he was calm too. I cannot praise this enough.”

“The special schools eye care service referred my son to see a paediatric ophthalmologist about his squint and he has just had his appointment. We asked the GP for a referral around 2 years ago with no success. He is now due to have surgery in the upcoming months.” 

“Through providing useful tips with us (parents) in the early days, and also explaining our daughter’s visual abilities and needs - this helped us understand when wearing glasses would have the biggest impact for our daughter… and helped us pick our battles in the early days :-) also providing replacement glasses really quick when needed helped ensure our daughter would not have time to get out of the habit of wearing them once she’d got accustomed to it…”

Our recommendations for the SEND review

For the above reasons and evidence our main calls for the SEND review are as follows:

1. NHS England must continue with its promised and expected rollout and funding of the NHS Special Schools Eye Care Service (SSECS) so it can continue to provide the positive outcomes it is already clearly delivering, on a national level. It should also address the eye care needs of children and young people who do not attend special schools eg. through ensuring enhanced pathways of community eye care are available across every Integrated Care System, the need for sensory checks at two years of age for children with developmental delay as a reform of the Healthy Child Programme, and more focus on eye care in the GP annual learning disability health check. 
2. The Department of Education engages with the development of the NHS SSECS highlighting it as an area of good practice and promoting as a nationally specialist service that many children with SEND will be able to access. 
3. The long term outcomes of the NHS SSECS are tracked with a view to understanding how, as well as providing equitable access to eye care, it is also supporting educational outcomes, independence and wellbeing of children and their families.
4. The Department of Education ensures that parents, families and schools and local authorities and local NHS commissioners are aware of the NHS SSECS and other pathways of eye care for people with learning disabilities (where these exist) through embedding the services in the ‘local offer’.
5. Ensuring that a standardised EHCP, which his more portable and easier to update, all contain a prompt about a child’s vision needs, however these may have been identified (primary, secondary or specialist services). This should also include other sensory needs – eg. hearing. 
6. Ensuring that a standardised EHCP can be clearer about health interventions that lead to education outcomes. We have found it difficult to identify where the NHS SSECS should ‘sit’ in EHCPs, and what the logical sequence is. 
7. Investment in the QTVI workforce is crucial. We draw attention to the important work of VIEW and NatSIP and the call for action to boost the numbers of boost the numbers of QTVIs and RQSs. This should include a clear and fully-funded plan of action to improve recruitment and opportunities to qualify into the profession, and retention of the current workforce. 
8. Better data collection of the heterogenous needs of children with SEND by DfE, which provides a more accurate reflection of support that children need (not binary – primary/secondary needs).

1.  Donaldson (2019). Findings from an opt-in eye examination service in English special schools. Is vision screening effective for this population?

2.  For example, see Solebo (2022). The role of screening and surveillance in the detection of childhood vision impairment and blindness in the UK. 

3.  Little (2015). A lack of vision: Evidence for poor communication of visual problems and support needs in education statements/plans for children with SEN.

4.  See Woodhouse et al (2013).  Ocular and visual status among children in special schools in Wales. The burden of visual impairment.

5.  Donaldson (2019). Findings from an opt-in eye examination service in English special schools. Is vision screening effective for this population?

6.  Pilling (2016) Are all children with visual impairment known to the eye clinic?

7.  See 2021 - 2022 data on SEND and EHCPs, which is held by DfE for maintained and non maintained special schools.