IN-vision aims to collate various resources that may be of benefit to those looking for further help or advice in relation to Infantile Nystagmus. If you feel we should be including something not currently listed, please contact us and let us know.
The information gathered below has come from a variety of sources and is correct to the best of the author’s knowledge at time of writing. Please always check with the relevant body for the latest information.
Need to talk to someone?
If you are the parent/carer of a child that is newly diagnosed with Infantile Nystagmus and would prefer just to talk to someone, IN-vision is here to help. You can request either a phone call or email from us using the form here, and we will be in touch for a chat.
Toggle section Checklist of services
Checklist of services to contact for parents of children with visual impairments
(compiled by Hackney Learning Trust)
- Qualified Teacher for Visual Impairment in the Local Education Authority: To provide advice and support about development, learning and education
- Portage Service (if there is one, in the Local Education Authority): Advice about general development of pre-schoolers with special needs
- Parent advice service in the Local Education Authority: To offer advice on local services and systems
- Local Children’s Centre: For information on local facilities and services
- Sensory Team in Social Services: To provide advice on independent living skills, mobility at home and applying for Disability Living Allowance
- RNIB and other charities: To offer advice, counselling and help contacting other parents
- Eye hospital: For registration as Sight Impaired or Severely Sight Impaired
Toggle section Education, Health and Care (EHC) plans
A statement of educational needs is a document produced following a full assessment of your child’s needs. The statement will take into account the additional help your child will require and what type of equipment they will need in school.
Education, Health and Care (EHC) plans will start to replace Statements of special educational needs and Learning Difficulty Assessments. EHC plans will focus on what a child or young person wants to achieve and what support is needed to do this. View more information here.
Toggle section Registration as Sight Impaired
Registration as Sight Impaired or Severely Sight Impaired
There is a register of visually impaired people that exists to enable your local authority to plan its services. Your child does not have to be registered but this may help you to receive certain benefits and concessions. Your ophthalmologist will decide whether your child is eligible for registration. If so, and if you agree, they will fill in a Certificate of Vision Impairment (CVI) form.
If an Ophthalmologist registers your child as Sight Impaired or Severely Sight Impaired a referral will automatically be made to ASCAT (Adult Social Care Access Team) who will arrange for the local rehabilitation officer to contact you and carry out an assessment.
If your child is not eligible for registration or you do not wish them to be registered, they can fill in a Referral of Visual Impairment (RVI) form and this will be forwarded to ASCAT (Adult Social Care Access Team) who will arrange for the local rehabilitation officer to contact you and carry out an assessment.
Toggle section Claiming Benefits for Vision Impairment
Benefits for Children with Vision Impairment
The majority of this information has been taken with kind permission from an Information Pack produced by Buckinghamshire Healthcare NHS Trust. It is to be used as a guide only and not guaranteed to be up-to-date and currently accurate. Always check with your local Citizen’s Advice Bureau or other qualified benefits adviser before taking action. Many organisations listed in the Useful Links section of this site offer a more in-depth support service.
This section applies to all parents whether claiming benefits or not. Children do not have to be registered with Vision Impairment to receive benefits although registration may help.
Disability Living Allowance – DLA
If your child is visually impaired you should claim DLA. It is not based on your income and you do not pay tax on it, so you will always be better off claiming. Eligibility for DLA is a legal question, not a matter for medical opinion although medical evidence plays an important part in the application process. Claims should be as detailed as possible, well supported with evidence. Getting professional advice and help in completing the DLA form can be helpful.
The Department of Work and Pensions website is a good place to start looking for information.
- From 3 months: Apply for Disability Living Allowance – Care Component
- From 2 years: Apply for Blue badge
- From 4 years 9 months: Apply for Disability Living Allowance – Mobility Component
- From 16 years: Claim Incapacity Benefit and Income Support
There are two components to DLA – care and mobility
Children must have met the qualifying conditions for at least 3 months for the care component to be claimed therefore the earliest it can be claimed is at 3 months.
The care component is paid for extra help that a visually impaired child needs compared with a sighted child of the same age e.g. several visits to hospital or dealing with a child’s contact lens care. There are 3 rates depending on the amount of extra time taken looking after the child.
This component is only for children over 5 years but the claim can be made when a child is aged 4 years 9 months so that it can be paid from the age of five.
This component has 2 rates. Children with sight loss alone generally will not get the higher rate. They will need to have other disabilities e.g. if they are severely mentally impaired, have behavioural problems, are deaf-blind.
Fares to Hospital
If you are on Income Support or Tax Credits, you are entitled to travel costs to and from the hospital for NHS treatment. If you have limited savings or on a low income, but not in receipt of the above benefits you may still be able to get help although it may only cover part of the cost. You will need to complete form HC1 that can be obtained from your Local Social Security office, GP practice, Dentist or Opticians.
Leaflet HC11 – Help with Health Costs is also available from your local Social Security Office or Health Benefits Division on 0845 850 11 66 and gives you more information about help with health costs.
Form HC5 is a refund application form for other health costs that need to be reimbursed and any costs incurred from attending NHS treatment e.g. travel costs. Remember you will need to be entitled to help with health costs when you paid the charges.
Once your child is in receipt of DLA at the middle or highest rate, you may be entitled to Carer’s Allowance. This is a taxable benefit to help people who look after someone who is disabled. You cannot get Carer’s Allowance if you are in full-time education with 21 hours or more a week of supervised study or earn more than £100 a week after certain deductions have been made – for example Income Tax.
Toggle section Publications and Useful Links
Developmental Journal for babies and children with visual impairment developed by the Developmental Vision Clinic at Great Ormond Street Hospital.
The Nystagmus Network has recently published The Challenge of Nystagmus: Proceedings of the Nystagmus Network Research Workshop. This along with other useful publications, such as Early Onset Nystagmus, is available from their online shop. They also publish a quarterly newsletter, Focus, for members.
Nystagmus In Infancy and Childhood: Current Concepts in Mechanisms, Diagnoses, and Management; by Richard W. Hertle Louis & F. Dell’Osso. A comprehensive resource, primarily for clinicians and scientists who care for children and infants with infantile nystagmus, detailing current understanding, evaluation, and treatments of nystagmus in infancy and childhood. Available online from Amazon and WHSmith.
Play it my way contains ideas for parents bringing up a child with a sight problem. The activities suggested are easy to carry out at home and based on day-to-day routines to help children find out about the world around them. Available from the RNIB.
For large print books published in the font size, paper colour and format to suit individual children’s eye conditions from over 2700 titles, see the Blind Children UK CustomEyes Books.
ClearVision is a UK postal lending library of mainstream children’s books with added braille.
Nystagmus Network: A membership based support group, with information for patients, parents and professionals.
American Nystagmus Network: A non-profit organisation serving the needs and interests of those affected by nystagmus.
Blind Children UK: Blind Children UK aims to provide the resources to ensure that educational goals can be achieved. They provide grants, advocacy, IT training and large print book service.
Royal National Institute of the Blind (RNIB): provide an excellent description on nystagmus. RNIB also offer a wide range of family support services. They can provide a parenting pack which gives advice on suitable toys, education and other useful information.
Action for Blind People is part of the RNIB Group and is an expert national organisation, ensuring blind and partially sighted people receive practical support in all aspects of their lives.
Albinism Fellowship: The Albinism Fellowship offers support to people with Albinism. Their website includes links to other organisations and more information about the condition.
LOOK: The mission of LOOK is to improve the lives of families with visually impaired children and young people by providing support information and activities. They have a helpful guide for parents about the Statementing process. Membership is free.
Please contact us if you would like your organisation listed here.
Toggle section Low Vision Aids, Technology and Toys
Low Vision Aids / Developmental Vision Clinic
- Low Vision Aid assessments are usually carried out by an Optometrist. They will assess your child’s needs and provide magnification as necessary.
- Optical low vision aids provide magnification either for near or distance tasks e.g. reading or looking at the white board. These are usually hand held devices but can be mounted on spectacles.
- Optical aids are usually supplied on loan from a hospital and exchanged if they are no longer appropriate. Your child should receive a regular check with the hospital Optometrist to ensure that their low visual aids are up to date.
- Non-Optical aids such as lighting adaptations and desk props should be discussed.
- Electronic Aids may be provided by the Local Education Authority.
- Children should be assessed before they start school – some children may benefit from a simple aid as early as 3 years old.
- Great Ormond Street Hospital run a Developmental Vision Clinic. It is a specialist clinic for children with visual disorders and impairment and provides assessment of the child’s functional vision (how the child is able to use their vision in everyday life) and their development, and links this with practical recommendations to help the child at home or school. Specialist help can play an important role in preventing or overcoming difficulties and delays and in enhancing the child’s potential.
- The team developed the Developmental Journal for babies and children with visual impairment, which is available to all parents who have a child with visual impairment under the age of three years.
The RNIB has an excellent introduction to computers and tablets and making them accessible.
Modern tech devices like tablets, smartphones and computers include a screen reader along with other innovative accessibility features for those who are blind or have impaired vision. More information is available here.
The British Wireless for the Blind Fund provides high quality, easy to use audio equipment which has been specially designed and adapted for listeners living with sight loss.
Using our website
This website operates on all modern browsers and operating systems and has been tested specifically against: Firefox, Internet Explorer 8+, Chrome and Safari.
Modern browsers provide built in tools for zooming a webpage’s content or increasing text size (e.g Ctrl+ [Ctrl key and Plus key together] on PC, Cmd+ [Cmd key and Plus key together] on Mac). We also have implemented the use of ARIA Roles and have generally made it easier for those using screen readers to access content.
We like to hear from people about the accessibility of our website and if you would like to tell us about your experience or make any suggestions as to how we could improve it, please contact us and let us know.
Toys and Recreation
There is much that you can do to help stimulate your child’s vision and encourage learning through play. High contrast toys are good for all babies as are toys and play-mats with varied textures and sounds. Hackney Learning Trust has compiled a great set of resource ideas that are designed to stimulate all the senses, and there are also some great suggestions from the RNIB and NBCS too.
Visual Stimulation Resource Ideas
- Shiny foil bag or deflated shiny balloon
- Waterproof bath lights
- Glow in the duck
- Push lights
- Light-up balls, pens, fans, and mini torches
- Pet toys are made to the same safety standards at children’s toys – Balls, ropes, bells, kitten toys, etc are excellent to adapt or include in play with children.
- Mosquito nets or white net curtain to project images onto, hang objects off and allow light and images to shine through into the surrounding room to include other children in the room. Securely suspend, drape over linen airer frames, hold it up for the child, lay it over their cot or play pen.
- Fold away net linen baskets
- Torch play either side of white umbrella
- Black umbrella can have led lights hung on it, or neon toys, streamers etc.Play aprons you can attach objects to the front of the apron
- Wands made out of mirrored CDs
- Kite fabric glued to a plastic fly swat to encourage tracking, fixation and interest. Streamers move when wand is held in front of a small fan and make flapping noises
- Plastic slinky spring
- Pet shop neon coloured balls
- Black plastic whisks wrapped with kite fabric, neon cords, or containing luminous balls
For more information please contact Melanie Norton, Specialist Teacher for VI, or Jenny Menzies, Specialist Portage Worker, at HLT 0208 820 7326.