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Call for action to improve support for children and young people with vision impairment

19 November 2021

A new report ‘Children and young people with vision impairment: The case for transforming support and services in England’ has been published by Guide Dogs’ Creating the Future Commission, 2021.

Guide Dogs established the Commission made up of young people, parents, carers, and experts in both policy and practice to come up with a set of recommendations that would help transform the experiences and outcomes of children and young people with a vision impairment in England. Of the 34,000 children and young people in England growing up with a vision impairment, 24,000 of them are under-18. Around 20% of children and young people with a vision impairment have additional special educational needs and/or disabilities (SEND) and 30% have complex needs.

Click here to read the report.

Significant findings from the report

The report details some of the significant findings about the need for change which include:

  • Experiences of diagnosis are highly variable, with too many parents and carers describing extended periods of uncertainty around the best next steps for their child. Signposting is offered inconsistently across the country.
  • There are geographic inconsistencies in accessing services and support which lead to perceptions of an unfair ‘postcode lottery’.
  • The education and wider support system for children and young people with vision impairment is under-resourced, with a shortage of key professionals.
  • The need for a more joined-up service and a single point of information for children and young people and their families has long been recognised as key to improving service delivery and outcomes. Better integration with wider service provision could transform outcomes.
  • The Education, Health and Care Plan (EHCP) process continues to present families with huge challenges, typically applying a “deficit model” approach that only releases support when a child or young person has already fallen behind.
  • The Commission heard that school staff who are not specialists in Special Educational Needs or Sensory Impairment lack sufficient training about sight loss and vision impairment in a general sense.

The role for ophthalmologists

Professor Rachel Pilling Rachel is a member of the Commission. Together with fellow paediatric ophthalmologists, she is leading on the development of a national clinical assessment protocol for cerebral visual impairment for The Royal College of Ophthalmologists. Professor Pilling has been a consultant paediatric ophthalmologist at Bradford Teaching Hospitals NHS Foundation Trust since 2010 and was appointed as Professor of Special Needs and Learning Disability Eye Care by the University of Bradford in 2020. She explains:

“The Commission has identified the major barriers to visually impaired children and young people fulfilling their potential, and how we as eye health professionals can play a role to improve this. It is important that each paediatric ophthalmologist builds a relationship with their local Visual Impairment service (Qualified Teachers of the Visually Impaired) to understand how referral might help the child, the criteria for referral and what information would be most useful to aid swift support.

“Ophthalmologists are unlikely to have in depth knowledge of the local resources and requirements within education and habilitation for a child with visual impairment; the development of a pathway to which they can direct parents and carers, alongside the creation of Family Support officers is welcomed.

“The recognition of the importance of workforce planning and inclusion of visual impairment within education and health curricula will be key to equip professionals to consider vision as a contributor to a child’s development and academic progress.

“One specific area highlighted is the different levels of support available to children with cerebral (as opposed to ocular) visual impairment which is an emerging area of practice and evidence-based interventions are under investigation. The diagnosis of cerebral visual impairment, initial explanation and signposting is an essential first step in addressing this.”

Summary of recommendations

The Commission says national action is needed to address the following recommendations:

A universal model pathway should be agreed to secure consistent delivery, access and understanding of the support available for children and young people with vision impairment. The Commission has created a model pathway that it believes should be endorsed.

The Government should commission and publish a new National Strategy for Children and Young People with Low Incidence, High Need Conditions. This should include a National Workforce Plan to ensure the right staff are trained and retained to support these children and young people.

National government needs to ensure local authorities are funded adequately to – lead the delivery of a new national offer of family support for children and young people with a vision impairment; provide additional Qualified Teachers of Children and Young People with Vision Impairment (QTVI) and habilitation specialists to avoid excessive caseloads; and establish minimum ratios of number of specialist worker : students.

The Department for Education should set out in detailed guidance what ‘reasonable adjustments’ under the Equalities Act could be in schools, colleges and all education settings.

When the new Specialist Vision Impairment Curriculum Framework is published, the sight loss sector should work in partnership to ensure it is adopted and implemented by each local authority, and that it is formally endorsed by the Department for Education. A module on basic awareness of low incidence, high needs conditions including vision impairment (both cerebral and ocular) should be included in teacher training, early years professionals’ training and generalist clinician training.

Regional action is needed to address the following recommendations:

Local authorities must prioritise the provision of life changing services such as habilitation and QTVI support.
Each NHS Integrated Care System (ICS) should be mandated to pool local knowledge and existing needs assessments about children and young people with a vision impairment or other low incidence, high needs conditions. This should be the basis of a Local Integrated Plan for Children and Young People with Low Incidence High Needs Conditions, something the Commission believes each ICS should produce.

The Commission

The members of the Creating the Future Commission are Dr. Martin Edobor, Lucy Edwards, David Holloway, Angela Kitching, Professor Rachel Pilling, Caireen Sutherland, Kelsey Trevett, Anthony & Sarah Williams, and Angela Wood. Full details are in the report.