Historically, CVI was a diagnosis acknowledged in children with intellectual disabilities. This emerging disability is now much more prevalent in cognitively able children, thus affecting a much wider proportion of school-aged children and young adults. CVI is the most common form of visual impairment due to brain injury or impaired function meaning specialist education support is imperative. The law is the most influential mechanism for ensuring equality and support for children with CVI in education. Breaking down the legal framework and analysing implementations, demonstrates substantial deficits in the levels of support available for children with CVI.

What is CVI?

CVIs are dysfunctions in the brain’s dorsal and ventral streams affecting vision, social development, learning and mobility. Knowledge and understanding of this condition across the medical profession, community support and education is vastly inconsistent. This is because CVI is a complex neuro disability caused by the brain being unable to process information from the eyes passing along the visual pathways in the brain. The visual perception of people with CVI can vary significantly at any given time. This inevitably makes accessing education and a learning environment incredibly challenging.

CVI affects individuals performing daily living activities, often requiring specific adaptations. For example, to support a person with CVI to access learning, adjustments must be made to their physical education environment to enhance accessibility and visibility. This also affects wider social settings both in the home and navigating the outside world.

Diagnostic challenges

CVI is considered a minority disability because diagnosis is challenging to secure and therefore documented incidents are low and currently restricted to those with severe and debilitating symptoms. There are multiple causes associated with CVI, which causes many diagnostic challenges. For example, children with CVI struggle with aspects of social communication. Social disengagement can lead to lack of concentration in school which is often misinterpreted as Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD) or general behaviour difficulties.

However, CVI can occur as part of a neurodevelopmental condition or can coincide with multiple other complex disabilities. The inter-relationships between these disabilities can lead to misdiagnosis. Nevertheless, ASD and CVI can co-exist because visual and perceptual deficits also contribute to ASD. It is important to highlight the link between CVI and ASD ensuring professionals apply the appropriate “social and educational strategies” when diagnosing.

However, even when professionals are aware of these inter-relationships, identifying CVI is challenging as there is still no agreed diagnostic criteria or thresholds for diagnosis. Diagnosis involves evaluating visual performance beyond high contrast acuity and understanding that visual function can fluctuate depending on environmental factors. Very few paediatric ophthalmologists have professional training on how to diagnose CVI, so identifying it correctly varies across England. This lack of understanding filters into the type of sensory support available within local authority provision in education.

CVI support in mainstream education

Children with CVI require their physical, intellectual, attentional, visual and auditory needs to be considered and supported within their education. The layout of schools has been found to significantly impact children with CVI. The school environment “needs to be calm in nature, non-threatening and conducive to learning”. Many children with CVI have significant difficulties in areas without optimal lighting. To avoid this, artificial lighting throughout schools needs to be bright and diffuse. Without, this alteration it impacts the child’s learning and concentration.

Sometimes a child with CVI will only have a 10-minute learning window within an hour. To ensure that these learning windows are effective, small group learning in a clutter-free neutral space with good lighting will maximise the child’s learning potential.

However, in mainstream education, children with CVI are supported using teaching techniques that are more appropriate for children with ocular visual impairments.  Visual fatigue is one of the biggest barriers to learning for children with CVI, therefore, inappropriately adapted resources will impact successful learning outcomes.

Children with CVI will avoid cluttered and crowded areas, withdraw socially, avoid visually challenging schoolwork, and be wary of moving around within the school environment.  Small group learning in a clutter-free neutral space with good lighting maximises learning potential. However, mainstream schools typically do not have sufficient facilities or teaching staff for these interventions.

There is much to do to support children with CVI in mainstream education, but some support does exist. This includes teaching assistant support, additional support from classroom teachers, and specialist or SEND-qualified teachers available within the classroom. Externally, there are Qualified Teachers of the Visually Impaired (QTVIs) along with Registered Qualified Habilitation Specialists (RQHSs) who provide outreach support in school settings funded by local authorities.

However, The UN Special Rapporteur on Poverty, in his report on the UK, concluded that “the social safety net has been badly damaged by drastic cuts to LA budgets, eliminating many social services”. This affects the availability of QTVIs and RQHSs in schools, leading to parents and carers taking on more of the pressure to support their child as the child’s learning environment is not fulfilling their educational needs.

The law

Mainstream schools must make reasonable adjustments to meet the needs of children with SEND, with “Disability” being a protected characteristic under Part 2, section 6 of the Equality Act 2010 (EA). The definition of “Disability” under the EA is “a physical or mental impairment that has a long-term substantial impact on a person’s ability to carry out day-to-day activities. Those who fulfil this definition are afforded additional protections, including “reasonable adjustments”. The duty to make reasonable adjustments for those with a disability is enshrined within Section 20 of the EA. The Equality and Human Rights Commission has released guidance to assist schools in implementing this duty which further elaborates what the duty of reasonable adjustments for disabled students entails. Local authorities and schools must “take such steps as it is reasonable to have… to avoid substantial disadvantage to a disabled person” caused by a provision, criterion or practice applied by or on behalf of a school, or by the absence of an auxiliary aid or service. However, the term “reasonable” as it is used in the EA is not further defined, and therefore allows room for flexibility on what constitutes reasonable support from one child to another, and is open to interpretation. As a consequence, this could compromise a child’s education if steps taken by the school and local authorities are insufficient to protect a disabled student from being substantially disadvantaged, in the interests of saving time, money and resources.

Despite the welcome enactment of the Children and Families Act 2014 (CFA), and its accompanying SEND Code of Practice, there has been consistent evidence that the current system of assessment and provision of services has been problematic in practice. The section 20 duty to make reasonable adjustments, highlights that schools must implement and abide by non-discriminative policies to ensure a child is not disadvantaged based on their disability. As the duty is also anticipatory, schools must also take positive steps to safeguard a child with SEND by creating an accessible physical environment. This is difficult to achieve in mainstream schools due to the limited availability of resources and funding constraints. For students with a CVI, this means that their learning potential will be compromised if provisions like; smaller class sizes, accessible materials and teaching assistants are unavailable. They will also be at risk of danger if they are not receiving support moving around the school, or in lessons that require the use of dangerous equipment.

Protections for an inclusive education system are also provided for under Article 24 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Nevertheless, the UNCRPD has been criticised for the lack of clarity surrounding the interpretation of the term ‘inclusive’, thus leading to inconsistencies in its application by local authorities and mainstream schools.  Therefore, close scrutiny of the provision for children with special educational needs in mainstream schools is required to provide a more comprehensive perspective that extends beyond merely scrutinising the legal framework. De Beco argues that “…disability is considered a social construct and society should be capable of correcting its own failure to be more inclusive”. This emphasises the need to revise and provide clarity to the legal framework currently in place to protect children with disabilities, whilst acknowledging the pre-existing social attitudes surrounding disability.

That being said, the implementation of the CFA 2014 is an indication of the government’s commitment to create change in the delivery of services for children with special educational needs. However, when specifically applying this to children with CVI, there is still a lack of professionals with appropriate knowledge of the disability. Specialist QTVIs must be involved in the assessment process and subsequently followed up by an RQHS to help the child with their mobility and independent living skills. Yet, this level of support is typically unachievable within mainstream schools because financial constraints have long beleaguered the provision of SEND services. Without this substantially changing, children with CVI and other SEND will continue to fail to have their needs appropriately met. Currently, the only way of ensuring such provision is provided would be to have it included within the educational sections of an education, Health and Care (EHC) plan.

In conclusion, increased awareness of CVI and how it impacts children and young people will provide a more robust foundation for inclusivity within the sensory provision and adjustments that currently exist in the mainstream education system. Whilst the legal framework already exists to support children with complex sensory disabilities, it is the lack of knowledge of CVI and long-standing financial constraints in the public sector that are the biggest barriers to securing the right level of support for a child with CVI in mainstream education.

All children have a right to an education. That education must be inclusive and robust when tested by the unique challenges of children with CVI, so that those children are able to meet their true potential. If you require support in securing the correct educational provisions for your child, please contact Geldards Education Team below for a free 30 minute consultation.