Category: Education

The front cover of the Nystagmus Network guide to nystagmus and the early years.

Nystagmus and the early years

The Nystagmus Network is proud to launch a new guide to nystagmus and the early years. Written for new parents and carers where a baby is newly diagnosed with nystagmus, this digital guide talks you through what to do, where to find help and how to support your child’s development from 0 to 5 years.

Nystagmus and the Early Years is the latest in a whole range of information guides for parents and carers, all available to download for free from our website in PDF and Word doc format. Plain text print versions are available on request to [email protected]

Reviewing the new guide, Nystagmus Network trustee and chair of the charity’s Support Committee, Kathryn Swanston, said: “Congratulations on another excellent resource. Well done to all involved in putting this together. The addition of the parent’s perspective is great.”

Download your copy of the new early years guide here

 

A young child undergoing a health check

Joint letter calls on health leaders to improve eye care for children and young people with learning disabilities

From the Visionary newsletter:

SeeAbility’s Eye Care Champions have led the writing and submission of a letter to the Secretary of State for Health and Social Care and Chief Executive of NHS England with their easy read ‘manifesto’ for better eye care for people with learning disabilities. This submission has been supported by Visionary and over 80 other charities, including the Nystagmus Network, individuals and organisations who also want to see improvements. The letter to health leaders singles out three key calls being made by the Eye Care Champions (opens Visionary website):

  1. NHS England continues with the expected rollout of its NHS Special Schools Eye Care Service, as progress has stalled.
  2. That every new Integrated Care System has a community learning disability eye care pathway.
  3. To ensure everyone with a learning disability is eligible for NHS sight tests, as people with learning disabilities are at such a high risk of having a sight problem.
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 gov.uk 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. 

The Nystagmus Network logo and the words 'parent power'

Parent Power April

The Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend a further session in our series of Parent Power webinars.

Each webinar, led by Karen, from IPSEA (the Independent Provider of Special Education Advice), supported by the charity’s volunteer education advocate, Claire and Sue from the staff team, introduces parents to the special educational needs support available in schools and early years settings and empower you to access it for your child. We’ll even introduce you to EHC plans.

The one day webinars (10am to 2.45pm) are FREE to attend.

The next workshop takes place on Friday 29 April

Book your FREE place here

Members of the Nystagmus Network can request advice from our volunteer education advocate, Claire or ask for a referral to our Education Advocacy Service for one to one support with casework.

The Nystagmus Network logo and the words 'parent power'

More Parent Power coming soon

The Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend our periodic Parent Power webinars.

Each webinar, led by Karen, from IPSEA (the Independent Provider of Special Education Advice), supported by the charity’s volunteer education advocate, Claire and Sue from the staff team, introduces parents to the special educational needs support available in schools and early years settings and empower you to access it for your child. We’ll even introduce you to EHC plans.

The one day webinars (10am to 2.45pm) are FREE to attend.

Dates for our next Parent Power workshop will be announced soon.

Members of the Nystagmus Network can request advice from our volunteer education advocate, Claire or ask for a referral to our Education Advocacy Service for one to one support with casework.

The Nystagmus Network logo and the words 'parent power'

Parent Power this February

Thanks to a grant from our friends at the Thomas Pocklington Trust, the Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend one of a brand new series of Parent Power webinars.

Each webinar, led by Karen, from IPSEA (the Independent Provider of Special Education Advice), supported by the charity’s volunteer education advocate, Claire and Sue from the staff team, introduces parents to the special educational needs support available in schools and early years settings and empower you to access it for your child. We’ll even introduce you to EHC plans.

The one day webinars (10am to 2.45pm) are FREE.

Places on the next February workshop are open for booking.

Book your place for Parent Power on Friday 11 February here

Members of the Nystagmus Network can request advice from our volunteer education advocate, Claire or ask for a referral to our Education Advocacy Service for one to one support with casework.

a blurred street scene

What do we see?

In answer to the question ‘What does a visually impaired child see?’ the Thomas Pocklington Trust has produced a new video simulating the 5 most commonly seen forms of vision impairment in children and young people, including nystagmus. The film, What do we see? 2, shows what it’s like to have nystagmus, retinitis pigmentosa, infantile or juvenile cataracts, retinopathy of prematurity and optic atrophy. Footage was recorded in a school setting.

Members of the Nystagmus Network forum for adults living with congenital nystagmus viewed the first draft of the nystagmus simulation and helped shape the final version. We are very grateful for their feedback.

TPT said: “Thank you so much for all your support and guidance throughout the making of this. We couldn’t have done it without you.”

Watch the video on YouTube here

The Nystagmus Network logo and the words 'parent power'

Parent Power is back!

Thanks to a grant from our friends at the Thomas Pocklington Trust, the Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend one of a brand new series of Parent Power webinars.

Each webinar will introduce parents to the special educational needs support available in schools and early years settings and empower you to access it for your child. We’ll even introduce you to EHC plans.

Each session will be led by Karen, a qualified and experienced trainer from IPSEA (the Independent Provider of Special Education Advice), supported by the charity’s volunteer education advocate, Claire and Sue from the staff team.

The one day webinars (10am to 2.45pm) are FREE and will be held online from November, 2021 through to March 2022, so there’s bound to be one that suits your schedule.

Places on the next two workshops are already open for booking.

Book your place for Parent Power on Friday 14 January here

Book your place for Parent Power on Friday 11 February here

Members of the Nystagmus Network can request advice from our volunteer education advocate, Claire or ask for a referral to our Education Advocacy Service for one to one support with casework.

A screen shot of the Nystagmus Network presentation at the VIEW conference 2021

Sue’s at VIEW

The annual VIEW conference for QTVIs (Qualified Teachers of Visually Impaired children and young people) is taking place last week and this – virtually.

The Nystagmus Network attends every year. In fact this was the last event Sue attended in 2020 before lockdown.

Sue’s virtual presentation on nystagmus in the classroom is exciting lots of comment and discussion online among delegates. Some of the topics they’re talking about are exams arrangements, work sampling and how to mitigate against potentially disruptive behaviour.

You can find information for parents and teachers in our searchable Education Resource HUB here