I have a child / young person diagnosed with a visual impairment. What happens next?
Your child / young person may or may not be registered sight impaired when they are diagnosed with Stargardt’s. The access to services vary depending on where you live. However, there are Visual Impairment teams throughout the country to support the child / young persons and their carers.
CVI (Certificate of Visual Impairment)
Your child / young person may be eligible to be registered as sight-impaired depending on their level of sight loss. To be registered, their vision must be examined by a Hospital Consultant Ophthalmologist. If they think they are suitable for registration, they will fill in Certificate of Visual Impairment (CVI) form. Your child will then either be certified as:
- Sight impaired or
- Severely sight impaired
Note that in Scotland the CVI form does not include children and young people under the age of 16 years. Instead, arrangements for supporting them will follow the Visual Impairment Network for Children and Young People (VINCYP) Pathway (a clear pathway to access specialist assessments and support).
What is the register?
Registration is voluntary.
Each local authority keeps a register of sight impaired or severely sight impaired people living in the area. The register is held by the social services department (social work department in Scotland) or its representatives. It helps your local council provide you with the best services it can. The register is confidential so your details cannot be shared.
Once a copy of your CVI is sent to your local social services department, they will contact you.
If you choose to be registered straight away then your date of your registration should be the date the consultant signed the certificate. Alternatively you can take more time to think about. It is worth noting that if you accept registration on behalf of your child upon reaching maturity then the child may contact the local authority and decline their registration.
The benefits of registration
There are certain advantages of registering. Concessions you may be entitled to include discounts on railcards, free public transport, leisure, TV licence, and NHS costs. The concessions you are entitled to depend on whether you are registered as sight impaired or severely sight impaired.
More details on registering can be found on the RNIB website:
Visual Impairment Team
This comes under the Sensory Team, which could also be known as Social Services. If your child does have a CVI then it is usually this team that will hold the registration.
The Sensory team in your local authority are a specialist team that work with children and adults who are blind or visually impaired, deaf or hard of hearing, Deafblind, and carers of people with sight and hearing loss.
Certain local authorities have specialist teams within their education department to support a child or young person with Visual Impairment. Details of their services can normally be found within the Local Offer under the Special Education Needs Department (SEND).
They will work with the young person so that they can achieve academically using the right tools and equipment. This can include magnifiers, specialist programmes such as Braille or programmes to vocalise and enlarge text.
For macular conditions such as Stargardt’s this may include:
- Magnifiers - these can vary from hand-held to electronic. A lot of computer software will have the ability to increase font size within their programmes.
- Touchtyping - an important skill to learn both academically and for future use in adult life.
- Modification of texts - for Stargardt’s the general consensus is “big, bright and bold”. This refers to the font size and does not mean enlarging the paper for example from A4 to A3 paper.
- Having wide lined paper for writing and larger squared paper for maths.
- Using darker pencil or black pen.
- Limiting busyness within a page – a description of a picture may be easier than the picture itself.
- Scribing skills - which could be used in preparation for tests / exams and / or to help reduce visual fatigue.
- A sloping board to write on to prevent neck strain when reading or writing.
- Braille - there are many trains of thought with regards to learning Braille, when diagnosed with Stargardt’s. Some recommend this is a skill that can be used as part of becoming independent. An example is using Braille to read medicine packaging. This is something that you and your child along with professionals need to agree on, on a one-to-one basis.
Advice can be given to class teachers on adapting the work to meet the VI child’s / young person’s needs. This advice may also include ideas for optimising remaining sight, taking into consideration things like glare from windows, positioning within the class and overhead lighting.
Habilitation means the learning of new skills, whereas rehabilitation means the relearning of skills that have been lost.
Your child or young person may be assigned to a habilitation worker / specialist.
Examples of support they provide include orientation and mobility, and independent living skills.
It is important to note that the child or young person are only limited by their own lack of independence and therefore, as parents, giving them the skills and opportunities is vital.
The sky is the limit, and your child has the ability to achieve and do well despite their vision loss.
More information about habilitation can be found at:
https://www.rnib.org.uk/insight-online (for professionals working with children with VI).
A Teacher for the Visually Impaired can be known as the following:
- QTVI-Qualified teacher of Children and Young People with Visual Impairment
- Specialist Advisory Teacher for Visual Impairment
- Peripatetic Teacher – teacher who works in number of schools to give specialist instruction
Information about Vision Impairment - Guide for Parents
Guide Dogs have good comprehensive advice about the education support services for children / young people with VI.
What is an Education, Health and Care Plan (EHCP)?
An EHC Plan is a legal document that describes a child or young person's special educational, health and social needs. It explains the extra help that will be given to meet those needs and how that help will support the child or young person to achieve what they want to in their life.
An EHC Plan will look at all the needs a child or young person has across Education, Health and Social Care. Professionals from each area, along with parents, will think of what outcomes are desired and what is needed to achieve them. EHC Plan will have the same protection in law as a Statement of Special Educational Needs.
An EHCP supports children / young people from birth to 25.
Further information about the EHCP can be found on these websites:
If your child has an EHCP, they will have an Annual Review to discuss the plan and the child’s / young person’s needs. It’s purpose is to check if the EHCP is still up-to-date and relevant for the child / young person.