Diagnosis


As soon as a young child is diagnosed with nystagmus, usually in the first few weeks or months of life, or when nystagmus is suspected, there are a number of considerations for the parent or carer.

Disabled Children’s Register


Disabled Children’s Register

The Children Act 1989 requires all local authorities to establish a register of children with a disability in their area. This register is used to assist service planning to meet the needs of children with disabilities and their families.

Registering is entirely voluntary and the information held on the register is confidential. Children’s names are added to the register at their parent’s request and, in return, parents will receive information that may be relevant to them about childcare and services available in their area.

You can ask your Health Visitor, Social worker or local Family Information Services about this.

Find your local Family Information Services contact details using the Childcare and Family Services Finder, provided free by The Family and Childcare Trust. Links to the Family Information Services Finder for Scotland and Wales are just below the main search prompt.

Max card

Some local authorities also offer families with children on the disabled children’s register, a Max card which provides discounted access to participating venues across the UK.

Other local authorities provide different discount opportunities and it is worth asking whether this is the case in your local area.

 

Eye Clinic Liaison Officer (ECLO)


What does an ECLO do?

Eye Clinic Liaison Officers (ECLOs) or similar early intervention support staff work closely with medical and nursing staff in the eye clinic and the sensory team in social services. They provide those recently diagnosed with an eye condition with the practical and emotional support they need to understand their diagnosis, deal with their sight loss and maintain their independence.

Level of ECLO support in your area

Find out the level of support in your area (UK wide) by downloading the register.

RNIB document on the benefits of ECLOs

 

 

Registration


Registration of vision impairment

Only a Consultant Ophthalmologist can register someone as Sight Impaired (SI or partially sighted) or Severely Sight Impaired (SSI or blind). The register is held by the local social services who are alerted that additional services may be needed to support the person registered.

Registration is voluntary and completely confidential. Parents sometimes worry about registering their child and labelling them as disabled. There is a lot to consider, but the main thing to remember is that there is no stigma attached to registration, that there are some advantages and that the young person or adult can de-register themselves later if they wish.

How to register

If your child has regular appointments with a Consultant Paediatric Ophthalmologist you can discuss registration with them. They can advise you whether your child’s sight is sufficiently impaired to qualify for registration in either of the two categories, SI or SSI and talk to you about the process and any advantages. Registration is based on the child’s visual acuity and field of vision. If your child no longer sees a consultant, you can ask your GP for a referral to one.

A Certificate of Vision Impairment (CVI)

At registration, the consultant completes a Certificate of Vision Impairment (CVI) in England and Wales. In Scotland it’s a BP1, in Northern Ireland it’s an A655.

Registration

Your local social services will receive a copy of your certificate and will then contact you to ask if you want your child to be included on its register of blind and partially sighted people. Provided you agree your child becomes registered. If you choose not to have your child registered, you can still get support from social services. They will discuss any needs with you.

The advantages of registration

When your child is older they may be entitled to free or reduced fare public transport and other concessions. It can also help you access welfare benefits and support with education on behalf of your child.

 

The Qualified Teacher of the Visually Impaired (QTVI)


It’s never too early to involve a Qualified Teacher of Children and Young People with Vision Impairment (QTVI) who will visit you and your child at home and in an early years setting and will provide advice, guidance and support. The QTVI really is the key person and will remain so as long as your child is in school.

Find your QTVI by contacting your local authority sensory services or visual impairment team. Look for contact details on the Local Offer page of your local authority’s website. If you can’t find what you need, call the local authority main number and ask for the QTVI serving your area.

Visual function is how a child functions visually within the everyday environment.  A functional vision test is carried out by a QTVI and provides ‘real life’ information on how a child uses their sight, for example in an educational setting or at home. The test will involve some clinical test materials and informal observations.

Thanks to a new video by the RNIB and VIEW parents can see for themselves the work of the QTVI in schools.

 

 

 

The playground


The playground is an important social space for your child, a place to build confidence and teach children how to socialise. Ask your QTVI for input and advice to ensure the playground is accessible for your child both physically and in terms of inclusion

The physical environment

Ask your QTVI or habilitation officer to perform a physical audit of the playground alongside your child if appropriate, to identify obstacles and hazards and to provide solutions.

RNIB Guide on supportive playgrounds for Vision Impaired Children

RNIB Guide on inclusive playground games

 

Ideas include:

  • Buddy bench for friends to come to
  • Organised inclusive group games in playground
  • Organise board games / other activities inside or outside with chosen friends
  • Friends to wear yellow bibs if appropriate
  • Staff to monitor VI child’s inclusion