Sue wears a Nystagmus Network T-shirt and sits at her exhibition table.

Sue at VIEW

Nystagmus Network’s Sue Ricketts travelled to Birmingham last week for the annual conference of VIEW, the national body representing Qualified Teachers of Visually Impaired children and young people (QTVIs).

Delegates were treated to presentations on the latest thinking on special educational teaching and support, including responses to the recent SEND reforms.

Sue was part of the exhibition, ensuring that teachers and support staff had all the resources they needed to signpost families to the Nystagmus Network for support and information. There was overwhelming praise for our digital guides, with ‘Wobbly Eyes‘, the booklet for young children, again proving the most popular, followed closely by ‘Nystagmus and Driving‘ and Sue took the opportunity to introduce our latest publication, the Nystagmus exams guide.

There was lots of interest, too, in our online book shop, featuring ‘Can I tell you about nystagmus?’ by Nadine Neckles and the newly published ‘She will never…’ by Amanda Harris.

In the run up to Nystagmus Awareness Day on 20 June, with our 2023 theme ‘Share your nystagmus story’ we are making available lesson plans and Powerpoint presentations for teachers and their pupils. We hope that these resources will not only raise awareness of nystagmus in schools but also help children and young people living with nystagmus feel better understood and more included.

Children in a classroom with their hands up to answer the teacher's question.

Reform for children and young people with SEND

As part of a SEND reform, which the UK government describes as ‘ambitious’, a green paper has been published as part of a consultation on a stronger national system for children with special educational needs and disabilities (SEND), boosting parent confidence.

Better support for children and young people with special educational needs and disabilities (SEND) is at the heart of a new national plan to level up opportunities, with a key focus on ending the postcode lottery that leaves too many with worse outcomes than their peers.

The Government’s SEND and alternative provision green paper, published on 29 March, sets out its vision for a single, national SEND and alternative provision (AP) system that will introduce new standards in the quality of support given to children across education, health and care.

The ambitious green paper is the result of the SEND Review, commissioned to improve an inconsistent, process-heavy and increasingly adversarial system that too often leaves parents facing difficulties and delays accessing the right support for their child.

The plans to reform the system will be open for a 13-week public consultation, giving families frustrated by the existing, complicated and bureaucratic system of support the opportunity to shape how a new system will work in the future – and give them confidence that their local school will meet their children’s needs so they can achieve their full potential.

More details on the website here

a group of children in brightly coloured tops stand together in front of a blackboard with chalked words and numbers on it.

Curriculum Framework for Children and Young People with Vision Impairment (CFVI)

Defining specialist skills development and best practice support to promote equity, inclusion and personal agency.

Overview of the CFVI

The Curriculum Framework for Children and Young People with Vision Impairment (CFVI) has been developed to support children and young people with vision impairment access an appropriate and equitable education. 

The framework presents outcomes within 11 teaching areas:

  • Facilitating an Inclusive World
  • Sensory Development
  • Communication
  • Literacy
  • Habilitation: Orientation and Mobility
  • Habilitation: Independent Living Skills
  • Accessing information
  • Technology
  • Health: Social, Emotional, Mental and Physical Wellbeing
  • Social, Sports and Leisure
  • Preparing for Adulthood.

It provides a shared vocabulary to be used by children and young people, their families and professionals in the UK who work with them. A shared vocabulary supports both better communication and purpose.

Parents and carers

The CFVI can be used to enable parents and carers to understand the pathways of support for their child and the services who may be  involved in providing that support within a given nationwide context. 

This increased understanding of the areas of focus for a child’s learning, development and wider participation and the common language and shared vocabulary that the CFVI provides, should enable parents to feel more comfortable and confident when meeting professionals to discuss their child’s progress and participation in education and the wider world. 

Join RNIB for the Curriculum Framework for Children and Young People with Vision Impairment (CFVI) Live Q & A Session

This is an opportunity to address the CFVI project team directly with any questions you may have about the framework itself, it’s development or its use in practice.

Book your free place 

The Curriculum Framework for Children and Young People with Vision Impairment (CFVI) live Q and A is a free, online event taking place on Wednesday 4 May from 12 to 1.30pm. 

You can book your free place by registering on Zoom

Please submit any questions you would like to be considered by emailing [email protected]. The closing date for question submissions is Monday 2 May 2022. 

A group of parents and Nystagmus Network volunteers.

Fingers crossed

Today at the Nystagmus Network we have our fingers firmly crossed. Why? Because we want to say a big THANK YOU to all the lovely national lottery players who helped make our Parent Power project possible.

Thanks to our National Lottery Community Fund grant we’re able to run a series of free workshops for parents at 5 locations across England.

At each workshop, parents and carers of children with nystagmus are learning about the legal rights of their children to support in school and, just a importantly, how to access it.

Want to join one of our workshops? We’re now taking bookings for London and Cambridge. Please click the links to apply.

The picture shows parents and Nystagmus Network volunteers with their fingers crossed at the first Parent Power workshop in Southampton earlier this year.