Being registered doesn’t mean anything about how your child’s vision will do in the long run; it doesn’t mean that they will lose more vision.
Just to confuse, there is also a document called the ‘Disabled Children’s register’ which refers to help by every local authority and it is used in planning services locally. It is not the same thing.
The names for being registered blind or partially sighted have changed recently to ‘Severely sight impaired’ and ‘Sight Impaired’. There is more information on the benefits of registering on the RNIB website.
Registration is only available to people who have problems with their sight in both eyes, so most children who have a unilateral cataract would not be able to register unless they have other sight problems. Many children with bilateral cataracts will gain good enough vision that they will not be eligible to register, but many will not. The rules about what level of vision entitles a person to be registered are on the RNIB website.
Guidance from the Department of Health suggests that people with aphakia (without lenses inside their eyes) or with opacities – as many children with bilateral cataracts will have – would normally be eligible to be registered as sight impaired if their best, corrected visual acuity is at, or below 6/24 (Snellen), although a child may be registered with a better visual acuity if they have additional sight problems, especially with their visual field.
It may be a bit harder for your child to register as an adult if their case is marginal and they have not previously been registered, on the basis that they’ve coped OK so far. For more on this, see the Department of Health guidance.
Registration is voluntary; you don’t have to register your child even if they could be registered and you can remove your child from the register or they can remove themselves once they’re older at any time if they don’t want the label. It’s not a once-and-for-all thing.
So why do it?
Some parents find the label helpful; for example there are several charities that will only provide services to those who are registered. It may be very helpful in getting a statement of special educational needs (SEN) and it may be helpful psychologically in accepting that your child has a visual impairment and in explaining it to others. This may be particularly important if your chid’s visual impairment is not obvious to others.
You and your child can only be offered some services if the authorities are aware of your child’s visual impairment.
Why not do it?
Some parents feel that the label is negative; that as people often respond negatively to the idea of blindness or visual impairment that people will not respond so well to their child if they have that label.
What are the problems with registration?
An Ophthalmologist has to sign a certificate of visual impairment (CVI) for your child to be registered. Some Ophthalmologists are very keen that children are registered and therefore accessing the best services and they will suggest it to parents. Others don’t feel this way and so don’t suggest it or may be more reluctant to fill in the form, especially in a more marginal case as many children with cataracts will be.
With a condition like cataracts it can be unclear how your child’s vision is going to develop for a long time so Ophthalmologists may hold off on filling in a CVI until your child is older and their vision has stabilised; obviously, it can be helpful to have the registration when the child is younger to help with things like getting statements in place and accessing help early. There is no form of temporary registration, so while an Ophthalmologist is optimistic that your child’s vision will improve they may not want to fill out a CVI.
Assessing visual acuity in young children is not easy; so most Ophthalmologists will wait until they are able to assess more accurately before issuing a CVI. Again, the wait prevents access to some services.
Many organisations pitch themselves and their services squarely at ‘blind and partially sighted’ people, rather than people with visual impairments (perhaps because it’s easier for raising money?) which can make them harder to access for children with cataracts whose vision is still developing and whose visual future is uncertain.
Sometimes professionals don’t like to raise the issue of registration or parents don’t want to have to think about it as, in order to register, parents and professionals have to put down on paper that a child has a real and premanent problem with their sight, and that can be very tough to accept.
Many parents have found that nobody else will raise the issue of registration or suggest it to them because of these difficulties or perhaps becasue there never seems to be the right time to mention it and that the initiative for doing it needs to come from them; if you think your child could be registered and would like to do it, talk to your child’s ophthalmologist about it.
Author: Anna, parent
This article has not been checked by any professional