As the parent of a child with (a) cataract(s) you will need to do a lot to make sure that your child is able to fulfil his or her potential. Nobody takes you by the hand and leads you through it and there are often a lot of battles to fight. All of us need some support sometimes.
Emotional support
CCN is a small organisation and there are a lot of different organisations already providing help and support to families with VI children. So we would rather point families in the direction of all the other sources of help and support than try to duplicate efforts.
CCN is hoping to set up a parent-to-parent service soon where we phone or e-mail back other families, especially families who have just had a diagnosis and would like to talk to someone who’s been there themselves, but we’re not there yet.
We have an arrangement with the National Blind Children’s Society (NBCS) who are able to send information out to families and affected adults who are not able to access information online. Please don’t ask for printed information if you are able to access it online or ask someone else to print it off for you, as we only have very limited resources and everything we have available is available on this website. If you do need any of this information printed out and sent to you, please contact NBCS at their Central office:
National Blind Children’s Society, 2nd Floor Shawton House, 792 Hagley Road, Quinton, Birmingham, B68 0PJ.
If you would like to talk to someone or have any general enquiries, please phone the NBCS (National Blind Children’s Society) on 01278 764 770 or e-mail them at FamilySupport@nbcs.org.uk
Meet other parents
We have an online eGroup for our UK members who are parents / carers of a child with (a) cataract(s) or adults who have themselves had cataracts as children. The eGroup is a private space where we chat, share ideas and support one another. The group works by email; every member can send emails to the group and either receive them directly into their inbox, or visit the group online when it suits, to read what everyone’s chatting about or join in a conversation. If you’d like to come and say hello, send an email introducing yourself briefly to the group moderator at egroup@childhoodcataracts.org.uk
There are two similar international online groups (mostly North American based), the PGCFA and APHAKIC lists, about which there’s more further down this page.
Financial support (benefits, charities)
Benefits
Many families bringing up a child in the UK who has (a) visually significant cataract(s) will meet the rules for receiving Disability Living Allowance (DLA). There are three different rates for the ‘care’ component of DLA and two different rates for the ‘mobility’ component, which are decided according to some fairly complex rules. DLA can be paid for any child over the age of three months and is not means-tested; it doesn’t matter how much other money you have.
Your child does not need to be registered partially sighted (sight impaired) or blind (severely sight impaired) for them to get DLA; neither do they have to have a visual impairment that would enable them to be registered.
Whether a child is entitled to receive DLA depends on whether they need substantially more care and attention than a ‘typical’ child of the same age because of their condition. ‘Substantially’ has been taken to mean at least one hour each day, whether that time is all in a block, or in bits throughout the day. So a child with a unilateral cataract who needs lots of extra supervision and care, while they are being patched, is likely to be entitled to DLA. Most children with a significant visual impairment as a result of bilateral cataracts need a substantial amount of extra care that would entitle them to receive DLA.
Many families don’t claim because they aren’t ready to accept that their child has a disability or don’t feel comfortable with visual impairment being defined as a disability, are put off by the forms or (often wrongly) don’t think they would be entitled to anything, or don’t think they deserve the money even if they’re entitled to it. Often parents are wrongly advised that they are not entitled to DLA by all sorts of people.
Too many families are not receiving the benefits they are entitled to. If you are spending extra time, energy and probably money, caring for your child because of their cataract(s) your child is very likely to be entitled to DLA.
To get a claim pack phone the Benefits Enquiry Line on 0800 88 22 00.
Claiming DLA is a complex business and successful applications seem to be dependent on how well the form is filled in, rather than anything else, so it’s wise to get advice on doing it, ideally from someone with experience in claiming DLA successfully for visually impaired children such as NBCS. In some parts of the country Contact a Family is able to help. Your local association for the blind may also be able to help – you can find your local association from Visionary (formerly called NALSVI). Better still, get someone with the right experience from one of these organisations to actually help you fill in the form.
It can be harder to get help filling in the form if your child has a unilateral cataract as they would not be classifed as ‘visually impaired’ unless they also have problems with their other eye; the organisations we’ve mentioned are geared more towards ‘visually impaired’ children. In this case it may be better to ask for help from a professional advisor who has experience of filling in DLA forms for children with a wide range of conditions, rather than one of the specialist organisations.
A successful DLA claim can entitle you to means-tested benefits such as Carer’s Allowance. It can also increase the amount of (means tested) tax credits you are entitled to a lot so, unless you have a family income over the limit for child tax credits (currently about 60k per year) you should also get advice on your whole financial situation as many people who have claimed DLA successfully often miss out on these other sources of financial help. Carer’s Allowance (or in some cases Carer’s Premium) can be paid if the person caring for the disabled child has a low income, regardless of any partner’s income, so you should get advice on whether you may be entitled to receive it if this could apply to you.
If you’re filling out the form yourself, set aside plenty of time. There are a couple of guides to benefits available online that other parents have found helpful Contact a Family’s pages on benefits are a great introduction as is the RNIB’s guide to benefits for children.
Although their work is for children with brain injuries rather than eye problems, Cerebra’s guide to claiming DLA for children is very general and well written.
This is only a brief guide about how you can benefit from DLA for your child. It is not a complete or exhaustive statement of law.
Charities
Family fund provides a grant for families with a disabled child who are on a low income; you can apply for once per year to do something that will make a difference to your child’s life, if you fulfil the criteria, they will send someone out to your home to apply for the grant for you.
VICTA provides grants for children and young people who have visual impairments (up to 25 years of age) for the purchase of equipment/services that will aid their educational or social skills – children need to registered sight impaired / severely sight impaired.
More medical information
Charities
There is a good basic guide to cataracts at VIScotland.
The Canadian Pediatric Glaucoma and Cataract Family Association (PGCFA) have a fantastic website with lots of reliable information. It is obviously geared for a Canadian audience, especially in relation to things like benefits and education. The medical information also reflects how things are done in Canada, which is, in some cases, different from the way they are done in the UK.
If your child has other disabilities as well as the cataracts then Contact a Family will be able to put you in touch with syndrome / condition societies that may be able to help with more medical information. They also use a telephone interpreter service, so if you would like to talk to someone in a language other than English, Contact a Family’s helpline are able to help. Thier number is 0808 808 3555.
The NBCS produce a (very chunky) directory called Direction Point – this covers services and organisations for children and young people with visual impairments, and is available through them.
Search engines
It’s quite easy, especially if you’re feeling fragile just after a diagnosis, to scare yourself and get thoroughly confused using search engines to look for information. Try to work out whether you are really in a good emotional state first if you’re going to do it – it’s not usually a good first port of call, but can be valuable if you’re looking for something specific and you feel confident in tackling medical research.
Medical literature can be hard to understand. A lot of the most recent research is only available through subscription-only services so the material you are looking at is likely to be out of date, unless you can get access through a university library. The more prestigious journals where the best quality research is usually published are more often subscription-only. Medical research papers are full of technical language that can be hard to understand or even misleading to a non-specialist.
Without the insider knowledge of knowing whose research is well regarded and who is perhaps not so thorough, it’s hard to know what to pay lots of attention to and what to take with a pinch of salt. Statistics are another problem; lots of research relies on statistical analysis of data and where the statistical methods have not been well chosen for the purpose, or there are problems in the way they have been used, the conclusions of the research may be unreliable. There is also the danger of finding material that upsets you a lot; especially images.
Online discussion groups (Yahoo! Groups, Google Groups etc.)
Be careful of online groups and online forums as a source of medical information, wonderful as they are as a source of immediate support and ideas. They can be a useful guide to the questions you should ask next, or whether there are alternative approaches to a problem that you might want to find out about, but a lot of the information you get may be inaccurate, as people don’t remember details well, or the thing that applied to their child doesn’t apply to yours. A small difference in age or in the eye condition may mean that totally different treatment is needed.
We have an online eGroup for our members who are parents / carers of children with cataracts or adults who have themselves had cataracts when they were children. The eGroup is a private space where we chat, share ideas and support one another. The group works by email; every member can send emails to the group and either receive them directly into their inbox, or visit the group online when it suits, to read what everyone’s chatting about or join in a conversation. If you’d like to come and say hello, send an email introducing yourself briefly to the group moderator at egroup@childhoodcataracts.org.uk
The PGCFA and APHAKIC lists work in the same way and are mostly parents from North America and also from other parts of the world. They are well worth joining, especially as they have a large numbers of members, so if you want help with an unusual problem, there’s more likely to be someone who’s come across it before.
North American healthcare systems really are different; doctors in North America are more likely to offer treatment for unilateral cataracts in situations where, in the UK parents would be advised against it or to be advised in favour of treating unilateral cataracts where parents in the UK are asked to choose whether they want surgery or not. Surgeons in North America are also less likely to offer treatments such as IOLs in younger children. The differences are to do with the way the different healthcare systems work rather than medical reasons – sometimes issues such as the cost of buying contact lenses to parents that are available free on the NHS to parents in the UK.
The RNIB parents place forum is a message board rather than a group; anyone can post and discussions tend to be slow-moving as each post is moderated. It’s also a public forum so anybody can read what you post.
This site
This site is growing steadily. If there’s something we haven’t yet covered you’d like us to write about, please contact us and we’ll do our best to do it.
Bringing up and educating a child with a visual impairment (social, holidays, sports, mobility)
Qualified Teachers of the Visually Impaired (QTVIs)
QTVIs work with children who have visual impairments more or less from birth. The sooner you get in touch with one the better – and it does not matter what level of visual impairment your child may have, or if you don’t really know how their vision is likely to turn out yet. Too many parents aren’t told about TVIs early on when actually, the experience and real relationship with you and your child that a TVI has, is incredibly valuable especially when you’re uncertain about your child’s vision and trying to work out how best to help your child in the early days.
A TVI will monitor your child’s development and help you put together activities for you to help your child, such as stimulating vision and basic mobility work in the early years as well as giving advice on things like lighting. They will also train your child’s carers, whether they are family members or a childminder or nursery on how best to help him or her, and keep training the people involved in looking after your child as his or her needs develop and change. Some Local Education Authority Teams operate toy libraries or specialist playgroups as well that your TVI can refer you to, and if your TVI thinks your child would benefit, they are able to refer them on to a range of other services.
Most teams have a system by which your child will have one allocated TVI who will follow them through their early years and school career; they provide training for teachers in mainstream schools and in special schools so that your child’s teachers understand properly how to manage his or her visual impairment and how to adapt materials if that’s needed, or in managing any other aspect of your child’s condition in school. The TVI knows your child really well and will make regular visits to schools to make sure everything is going smoothly. The TVI is the vital link in the chain that should mean (if all goes well) that your child gets all the help, resources and support that he or she needs throughout his or her education. A good TVI, and a good relationship with your child’s TVI, can go a long way towards overcoming the disadvantage of a bad Local Education Authority (LEA) of which there are many.
Many teams have an open referral policy – just phone them up or e-mail them yourself – the contact details should be available through the LEA. If your LEA does not operate an open referral policy, your child may need to be referred by his or her consultant or GP.
Educational Advocacy
The quality of educational provision varies wildly and is a real postcode lottery ranging from superb to appalling. Provision of services for children with special educational needs is an area that some local authiroties try to save some money on by not doing even the things they’re legally obliged to do. All the evidence suggests that effective early intervention is the best way to help children with sensory impairments and the better local authorities understand this and provide excellent services, but frustratingly it can be a struggle for many parents to get the right support for their child and common for parents to have to follow legal avenues to get even the bare minimum. It is wise to get in touch with an independent Educational Advocacy officer through the NBCS to discuss what your child should be receiving in terms of help and to get any backup you may need to get it.
In Wales SNAP Cymru is a charity offering free, independent advice and support on education issues to parents of children with any special educational needs.
This is an area we hope to cover much more extensively on this site in the future as it’s such a big issue for so many parents.
This site
You will find articles on bringing up a child with cataracts in our Parenting section and may also find many useful bits of information amongst our Personal Stories. Please tell us if there’s something you’d like us to cover.
Other Parents’ Groups
It is worthwhile getting involved with parents groups, whether they’re international, national, online or local to share ideas and tips. There are also one-off events organised by many of the organisations we’ve mentioned which can be great for getting on touch with other families.
You will find a list of the local groups we know about in our Directory section. Your local society for the blind may offer children’s services, some do and some don’t – Visionary (formerly called NALSVI) has a contact list. In some areas, parents’ and children’s groups are independent, in others they are part of larger national organisations and in others there are no groups. If you know of a group we haven’t listed, please let us know.
The US National Federation of the Blind (NFB) has a division known as the National Organization of Parents of Blind Children (NOPBC) which has a very positive attitude towards bringing up children with visual impairments, and what they can achieve. Their whole site is highly recommended reading, but especially this article on bringing up a partially sighted child by Barbara Cheadle. Also from the US, the Blind Children’s Resource Center has lots of really useful information.
Other charities
RNIB Parents Place has a lot of useful information on bringing up and educations a child with a VI. Their magazine for parents of children with visual impairments, Insight is well worth subscribing to. RNIB also run local parents groups in many areas.
Actionnaires are sports clubs for children run by Action for Blind People. Because it can be hard for visually impaired children to get enough exercise and sports at mainstream schools are often not well adapted, these clubs can be incredibly useful and a good way for your child to get to know other children with visual impairments. Children under eight need to go with a parent or carer and over-eights can go by themselves; friends and bothers and sisters are also welcome.
Look is the national federation of families with visually impaired children. They have a newsletter, local groups, and offer advice and emotional support. They also offer OutLOOK, a special project for visually impaired young people (11 to 25 year olds).
A number of charities have subsidised or free breaks and holidays for visually impaired children and their families including Look, Action for Blind People, RNIB and NBCS.
Mobility Instructors
Mobility instructors (also known as Rehabilitation Workers, ROVICs and various other things) can be hard to find, especially those who work with children. Some are employed by Local Education Authorities (LEAs), others by local councils and others work freelance and are contracted to work with particular children by the LEA. You may have to hunt around and the national shortage is such that you may not be able to find one. Their job is to work with children with visual impairments to get them moving and mobile as independently as other children of the same age would be.
Other professionals
Other useful professionals include: Community paediatricians if your child has any developmental delay. Occupational therapists can help with fine motor problems, speech and language therapists (SALTs) can help with speech and language problems, physiotherapists, and portage workers. These can be accessed through your consultant, GP, or sometimes Health Visitor and, if you have one, through your QTVI. In some areas, a Social Worker may also contact you to work out what services your child needs, often only when/if you register your child as blind or partially sighted.
Books on parenting a child with a visual impairment.
There are some very useful books and other publications on the subject available. Please see our page on books
Registering your child as blind or partially sighted
If your child has sight problems in both eyes you should think about whether your child could or should be registered. Please see our page on registration for more on this.
This article has been checked by the Family Support Team at Great Ormond Street Hospital, London