Looking Ahead: a Parent S Guide

1.Looking ahead: a parent’s guide For parents of children who are blind or partially sighted Contents Introduction Coming to terms with your child’s sight loss What you can do Help and support at the eye clinic Registering your child as blind or partially sighted Early years Wearing glasses RNIB NI Family Support Officers RNIB NI Realise Project RNIB NI Youth Service RNIB NI Employment Service Angel Eyes NI Going to school Education support Other support professionals RNIB NI Welfare Rights Service RNIB NI Products and Advice Service RNIB National Library Service Jargon busting Useful contacts Introduction “When our child was diagnosed as having a life-long condition which would significantly affect her vision, our world suddenly changed. So many questions needed to be answered but it was difficult to know where to turn; who to turn to and what to ask.”

This statement is reflective of many parent’s reactions upon diagnosis. In producing this booklet, we hope to answer some common questions.

We have attempted to set out a roadmap of services that parents and children may encounter throughout their sight loss journey. While not definitive, it provides information on the key statutory and voluntary services provided within Northern Ireland.

This publication was produced by the Royal National Institute of Blind People Northern Ireland (RNIB NI) with the Children and Young People’s Strategic Partnership and the Northern Area Outcomes Group.

We would like to thank them for their continued support.

1 Coming to terms with your child’s sight loss First steps Finding out that your child has a sight problem can feel like a ride on an emotional roller coaster. There’s no “normal” response – different people respond in different ways.

If your child has additional or complex needs and you discover they also have a sight problem, it can be especially hard to come to terms with.

In addition to the joys and pleasures that your child gives you, at different times following diagnosis, you may feel disbelief, anger, sadness, worry and frustration. Different feelings come and go and sometimes catch up with you when you least expect it.

All the while your child’s need for food, love, warmth and security continue to demand your energy, care and attention.

When an older child loses their sight, it may take a long time to adjust. Remember that it’s possible to become independent again. You might find it helpful to talk to others about their experiences and RNIB NI can put you in contact with other families.

Parental support Talking to friends or family can sometimes be a useful first step. There may also be a support group in your area. RNIB’s website rnib.org.uk/information-everyday- living/family-friends-and-carers has advice to help you understand your child’s eye condition, your child’s sight loss, the effect it may have, and the support available from professionals. Our information on mobility and habilitation, talks about supporting your child to learn to move independently and develop living skills.

If your emotions are causing you difficulties in any way, contact RNIB’s national Emotional Support Service, which offers confidential support, information and counselling.

Getting in touch You can get in touch by calling our Helpline on 0303 123 9999 or email [email protected] and ask to be referred to the Emotional Support Service. Alternatively you can email us at [email protected] What you can do Get informed A good first step is to make sure you have access to the information and support that is available. This booklet will cover general information about all the services and professionals that you can expect to encounter on your child’s sight loss journey.

2 Meeting and dealing with eye specialists Parents have told us that when visiting any specialist or doctor it is helpful to write down your questions before the appointment and to write the answers during the consultations – it is often difficult to retain everything said within a 10-15 minute appointment.

Possible questions for the doctor, ophthalmologist or paediatrician: What is the condition called? Can you spell that for me? What causes the condition? Please explain it as simply as possible. How does the condition affect my child’s ability to see? Does this condition sometimes run in families? If so, can I speak to a genetic counsellor? Can anything be done to cure or help this condition? Is any special treatment necessary? What might help? What can I do to help? Is there anything my child mustn’t do (for example, rub their eyes, shake their head or jump on to a hard surface)? Even with treatment, is the condition likely to get worse, get better, or stay the same? When should my child be examined again? Where might we go for further advice and help? For example, could you give us the contact details for visual impairment professionals in social services, the Education and Library Board and voluntary organisations? Is there anything further I can do to help my child? Have you got any information on this subject that I can take home and read? What can I do to encourage my child to help their vision develop, and to make the best use of their sight? Can you refer my child to a Qualified Teacher of the Visually Impaired (QTVI)? I would like to discuss how my child’s sight might affect him/her at school or nursery, and what sort of support should be put in place. Can I speak to an Eye Care Liaison Officer (ECLO) about my child’s needs? Help and support at the eye clinic Eye Care Liaison Officer (ECLO) service RNIB NI offers emotional and practical support at the point of diagnosis. Our Eye Care Liaison Officers (ECLO) also receive referrals from optometry practices across NI, social workers and other sources including self referrals.

The ECLO service is available in all eye clinics throughout Northern Ireland; the ECLO’s are a first point of contact for people diagnosed with sight loss and are trained to work with children. The hospital staff will normally refer a newly diagnosed person to the ECLO, but if you did not meet an ECLO when your child was diagnosed you can ask to meet one at anytime.

The role of the ECLO is to provide: emotional support at point of diagnosis or any point thereafter onward referral to other services (statutory and voluntary organisations) practical information and advice.

3 Getting in touch You can get in touch with one of our Eye Care Liaison Officers by calling 028 9032 9373. Alternatively you can email us directly at [email protected] Registering your child as blind or partially sighted What does it mean? If you decide to register your child’s sight loss with your local Health and Social Care Trust (HSCT), it may be easier to access some of the help and support they may need.

There are two levels of registration known as: Severely sight impaired/blind. Sight impaired/partially sighted.

The register is held by the Trust’s Sensory Support or Children’s Disability Teams. It helps your Trust area provide you with the best services it can. The register is confidential so your child’s details cannot be shared.

Your child will be entitled to concessions such as discounts on bus and rail travel. It may also help with support in education and when applying for benefits.

Is my child eligible? In order to be registered, your child needs to visit an eye specialist, called a consultant ophthalmologist. They will conduct an eye test and complete a Certificate of Vision Impairment (CVI).

During the test the consultant will measure your child’s ability to see detail (visual acuity) and how much they can see from the side of their eye when looking straight ahead (their field of vision). Following this the consultant will decide if they are eligible to be registered as either blind or partially sighted.

If your child is not eligible to be registered it does not mean that they will be unable to access the support they need. Also, if you do not want to proceed with the registration process at this time, that is your choice. There is no time limit on registration and it can be completed at any time.

For more information on visual acuity and what you child may be able to see, please visit http://biomed.science.ulster.ac.uk/vision/-Vision-Resources-.html Early years There are many things parents can do to help a child with sight loss learn more about the world around them.

Use a wide range of voice tones, inflections, and volume and talk to your baby during feeding, dressing, or changing. Be specific when talking to your baby so they begin to develop a sense of the variety of words.

4 Encourage your baby to explore objects with their hands and learn the feel of different textures, such as a wet/dry washcloth, different articles of clothing, or food tastes and textures. Involve your baby, even when very young, in things you do around the house. Describe what you are doing, such as setting the table, so they begin to make associations. When you want to show your baby something, try to relate it to what they know. Give your baby hands-on experiences. Colour and contrast can help make things easier to locate and identify for children with some vision. Look for places to take your child that have things to touch. If you have other children, make sure they are part of the experience, too. Wearing glasses When does my child need to wear their glasses? Your optometrist will tell you when your child should wear their glasses. Generally when starting to wear glasses it is best to aim for full-time wear. This gets the child, especially young children, used to wearing glasses all the time.

Why won’t my child wear their glasses? There can be several reasons for a child’s reluctance, and it is important that you consider each one. Are your child’s glasses fitting properly? Are the glasses too tight against the side of the head or behind the ears? Are they too loose and keep slipping down your child’s nose?

A child will not want to wear glasses that feel uncomfortable. Glasses can be adjusted to fit your child properly and you should insist that the optometrist/optician takes time to do this when you collect the glasses. If the glasses become bent or stop fitting properly get them adjusted again. Your optician will be happy to do this for you.

If your child is reluctant to wear their glasses at first this may be because they are adjusting to the prescription. When we make the world clearer with glasses, we may think this means “better” – your child may just think “different”. This difference can sometimes take a little while to get used to.

Some children do not like objects on or near their face. Others do not like change. Once your child learns that the glasses will not harm them and gets used to the glasses they will be happy to wear them.

How do I persuade my child to keep their glasses on? We find a simple “programme” works well.

Choose an activity that your child enjoys doing with you, and one for which the glasses will help – discuss this with your optometrist. For example, it may be reading a story, or watching a favourite video. Make it a “special time” together, this way your child learns to associate wearing glasses with a pleasant experience. Put the

5 glasses on at the start of the activity (don’t forget to put yours on if you need them too!) and make the activity short at first. If your child takes the glasses off, simply stop the activity. Persevere, increasing the length of time and/or introducing a second “spectacle-wearing” activity.

Don’t worry if it takes a long time (weeks or even months) before your child is happy to keep their glasses on.

Most importantly, do not turn it into a battle – your child will win! Children learn very quickly that throwing glasses across the room gets more attention than almost anything else!

Avoid curl sides (except for tiny babies) and straps to keep glasses on. Usually they just give your child something to fight against, and make matters worse!

If your child won’t wear their glasses at home then perhaps they will wear them at school. Chat to the class teacher and ask for help in trying to persuade your child to wear the glasses. Give them a copy of this information. There may be other children in the class who wear glasses and this may encourage your child to wear theirs.

What do I do if my child will not wear their glasses? Some children will not wear their glasses, even after all of the above has been tried. Don’t panic. It is common for children to grow out of their reluctance to wear glasses. Contact your optician to discuss the next step. It may be that if you wait for a few weeks and then try again it will be more successful. Glasses will improve your child’s vision and this benefit will eventually motivate them to want to wear their glasses.

The above information was developed by Dr J Margaret Woodhouse (Cardiff University) and Dr Kathryn Saunders (University of Ulster). RNIB NI Family Support Officers Our Family Support Officers are there to support any child with sight loss aged 0-19 years and will provide continued support throughout their sight loss journey.

The family centred service includes: Emotional support for parents. We provide emotional support for parents and opportunities for them to meet and talk. Information and advice. We give parents the information they need regarding sight loss. Child and family events. We arrange events for children and families to meet and share experiences in a relaxed and enjoyable way. These include family information weekends, fun days out and summer schemes. Parent and toddlers groups. Monthly groups take place throughout Northern Ireland for pre-school children and siblings. Confidence building. We work with children and young people on building confidence through a range of challenging activities. Support for children with complex needs. Tailored events for children who have sight loss and additional needs.

6 Referral to our Welfare Rights Service. Our Welfare Rights Service can help you claim the benefits, tax credits or allowances to which your child is entitled if they are blind or partially sighted. Call 028 9032 9373 or email us at [email protected]

“The advice and support we have been given by RNIB NI has been invaluable. It has been particularly good to meet other families who have had similar problems and extremely important for my son to meet and interact with other children who have vision problems. It has really helped him accept his diagnosis knowing he is not alone.” Louise Berry, parent

“My family have benefited as a unit from the social interaction on the day trips and family weekends, not only for Jack with other children, but also us as parents to have the chance to share experiences and concerns. This and the advice we have received makes us feel we are not alone and that someone understands our situation. Our children are special, there is nothing they cannot do if they put their minds to it, the world is their oyster.” Amanda Chambers, parent

Getting in touch You can get in touch with our Family Support Officers by calling 028 9032 9373. Alternatively you can email us directly at [email protected] RNIB NI Realise Project There are times in a child and young person’s life when they may need more support in order to help them move on to the next stage.

We provide transitions support to children and young people aged between 8 and 20 through the Realise Project. The aim is to empower and support children and young people transitioning from primary school to post primary, post primary to third level education and then on to full time employment.

This support is broken down into age appropriate categories and includes:

8-11 year olds One-to-one tuition in extracurricular activities such as swimming or music. Taster sessions in accessible technology.

12-16 year olds One-to-one careers support when choosing subjects. One-to-one ICT support as well as ICT workshops with assistive technology. Confidence building programme of structured activities, through residentials at the Share Centre, Lisnaskea. Participation in the Duke of Edinburgh Award that will build confidence and provide a vehicle for personal development, and contribute towards developing a personalised Curriculum Vitae (CV).

7 17-20 year olds One-to-one careers support which includes help with job searches, completing application forms and interview techniques. This will enable our young people to negotiate the transition from education to employment. One-to-one, or group training, in assistive technology. This training will include participation in an accredited ITQ qualification. Participation in the Duke of Edinburgh Award that will build confidence and provide a vehicle for personal development. Confidence building programmes of structured activities, through residentials. Structured work placements. Visual awareness training for your school: We provide tailored training to schools. This increases understanding of sight loss and eye health amongst school children.

This project is funded by the Big Lottery Fund.

Getting in touch You can get in touch to access any of these services please contact the Realise Project on 028 7136 6060. Alternatively you can email us directly at [email protected]

RNIB NI Youth Service RNIB NI’s Youth Service is aimed at young people aged 14–25. We support young blind and partially sighted people to lead fulfilled and independent lives. Activities can include the following:

Residentials: We run a variety of residentials that give young people the chance to meet new people, develop independent living skills and share their views on how our service can best support them in their daily lives. Day events: We run many different day events from outdoor adventure days to bowling and from water sports to cinema trips. These are designed to be fun social outings for young people to meet up and have a good time. Duke of Edinburgh Award: We support young people to complete their Duke of Edinburgh Award at all levels (Bronze, Silver and Gold) by coordinating their expedition and giving advice on completing all other aspects of the award. Confidence building and assertiveness courses: We offer interactive informal learning sessions with young people to increase confidence, independent living skills and assertiveness. Visual awareness training for your school/youth group/youth work professionals/sports club: We provide tailored training to schools, youth groups, youth work professional and sports clubs. This increases understanding of sight loss and helps improve accessibility for young blind and partially sighted people. Work placements for young people aged 16 and over: We provide work experience and paid work placements for young people to help them develop transferable skills for employment while also gaining practical experience in the work place. Volunteering opportunities: We provide young people with the opportunity to volunteer to support our services and develop essential skills in the process. Accredited OCN courses: We support young people to complete accredited OCN courses including Community Youth Work.

8 “On my Duke of Ed I accomplished lots of difficult tasks both physical and mentally, some of these tasks were harder than others but that did not stop me from completing my goals. The training was intense but the encouragement from my friends and Niall at RNIB NI made me get to where I am today. The final expedition was the most challenging of all. This really pushed me to the limit but I wasn’t giving up. We went to Scotland and cycled 72 miles. We started in Fort William and finished in Inverness the journey was amazing and one of the hardest things I ever had to do, but when we finished the sense of self achievement was brilliant. We then arrived back home the next day ready for our gold!” David Hunter, 18

Getting in touch You can get in touch with our Youth Service team by calling 028 9032 9373. Alternatively you can email us directly at [email protected]

RNIB NI holiday chalet The chalet is based at the Share Holiday Village, which is an outdoor activity and adventure centre located on a 60-acre site on the tranquil shores of Upper Lough Erne. Share works for the inclusion of disabled and non disabled people by providing opportunities for all to participate in a wide range of activities such as canoeing, kayaking, orienteering, archery, banana skiing and laser combat fighting.

Our chalet at Share has double-glazed, en-suite bedrooms, central heating for year round use and comfort and a self-catering kitchen. The chalet can hold 12–14 people and is available to rent by families of blind and partially sighted children at a subsidised rate.

Getting in touch You can get in touch to book the chalet with our Youth Services team by calling 028 9032 9373. Alternatively you can email us directly at [email protected] RNIB NI Employment Service Once you are ready to look for work, our employment service can help you in the following ways:

Become more employable We provide a range of activities that will increase your chances of getting a job including confidence building sessions, IT training and work experience opportunities.

Careers advice and finding a job We offer practical advice and support if you are looking for work or want to change your career. We also offer advice and guidance on courses of Further and Higher Education. Our specialist employment officers can give careers advice and when you

9 have found a job that you want to apply for, we can help you fill in the application form, design a CV and prepare you for the interview.

Staying in work Once you are in work, you may experience difficulty in doing your job. We can advise on adjustments that can be made to allow you to continue in your job and provide training to your employer and work colleagues so that they have a better understanding of sight loss.

Getting in touch You can get in touch with our Employment Team by calling 028 9032 9373. Alternatively you can email us directly at [email protected] Angel Eyes NI Angel Eyes NI is a registered charity that supports parents in Northern Ireland who have a child with sight loss. Angel Eyes NI is a network of parents throughout Northern Ireland who support other parents. It runs events including family fun days and education and advice sessions.

The aims of Angel Eyes NI are to: 1. Empower parents to help enable their children to fulfil their potential. 2. Provide a unified voice for parents to influence service providers and ensure they reflect the needs of parents and children. 3. Provide opportunities for children with sight loss to participate in a range of activities, enabling them to build confidence, make friendships and develop abilities.

Angel Eyes NI: Provides a support network run by parents for parents. Signposts parents on to other appropriate services and agencies. Holds family days across Northern Ireland throughout the year. Runs educational and advice days for parents. Informs parents of types of services available to them. Works in partnership with local and national organisations to provide support for and lobby on behalf of children with a visual impairment.

Getting in touch You can get in touch with Angel Eyes NI on 028 9076 0163 or 07411 488 897. Alternatively you can email [email protected] Website: angeleyesni.org Facebook: facebook.com/pages/Angel-Eyes-NI Twitter: Twitter@Angeleyes_ni Going to school – who will help my child? The majority of children with sight loss are able to attend mainstream schools with support. However, some are placed in special educational settings, including

10 Jordanstown School which specialises in catering to the needs of children with sensory loss.

When your child is about to go to school, they may need help beyond what their teachers will be able to provide. A Statement of Special Educational Needs (SEN) will identify what your child’s needs are and what additional help they might need.

The Special Educational Needs Advice Centre (SENAC) provides an independent advice, information and advocacy service for parents of children and young people with special educational needs. This service is available for young people up to the age of 19, across a wide range of learning difficulties/disabilities.

What is a statement? A Statement of Special Educational Needs (SEN) sets out your child’s needs and the help they should have. It is reviewed annually to ensure that any extra support given continues to meet your child’s needs.

How are statements given? Your child’s statement will be carried out by your local Education and Library Board (ELB). You or your child’s school can ask for a statutory assessment if it’s apparent that: your child (under school age) will need extra help or special provision when they start school your school age child has a learning difficulty or a disability which is holding them back at school and the school is unable to provide the help your child needs.

If an assessment is necessary, the ELB will then seek the views of: you and your child your child’s school an educational psychologist a doctor social services (if your child is known to them).

The ELB must check your child’s progress at least once a year after a statement is made. This annual review includes a meeting with parents, who can take a friend or adviser with them if they want to. Education support Qualified Teacher of the Visually Impaired (QTVI) A Qualified Teacher of the Visually Impaired (QTVI) – also commonly known as a Vision Support Teacher – is a specialist teacher who provides advice and support to children and young people who are blind or partially sighted, their families, schools and other relevant professionals. The QTVI assesses each child’s functional vision and provides information and advice about specific eye conditions and the educational implications for learning.

11 Advice and training is also given by the QTVI to school staff to ensure children have access to the curriculum, and that they are appropriately supported within the classroom and school environment.

The QTVI works in partnership with schools to ensure that the needs of pupils with sight loss are fully met. The aim of the support provided is to enable pupils to fulfil their potential whilst at the same time developing and fostering independence. The range of support available includes: Advice on the provision of adapted materials in the appropriate format, as necessary. Advice on curriculum access strategies. Provision of in-service training for school staff. Provision of specialist equipment and training in its use. Teaching in specialist curriculum areas as necessary, for example braille, ICT. Advice regarding special consideration or arrangements for examinations or assessment procedures. Awareness-raising for peers. Advice regarding transition planning, work experience placements, career options through attendance at Annual Review/Transition planning meetings and liaison with school staff, SENCo, transition coordinator/officer, careers adviser and other external agencies as appropriate.

Regional Vision Resource Base The Regional Vision Resource Base (RVRB) is a service (funded by Department of Education and hosted by the Belfast Education and Library Board) that supports pupils with sight loss to become independent and effective learners by opening up wider access to the Northern Ireland Curriculum.

The Resource Base, which is managed by a QTVI, provides a transcription service and a Learning Support Service for equipment and technology. It also offers a Technology Loan Service where the QTVI can apply on behalf of a student, to borrow selected specialist technology. This technology is available for trial by the student for a school term, after which the Education and Library Board will make an informed decision regarding the purchase of this specialist technology for the student concerned. Other support professionals Why do children with sight loss often have a social worker? Social workers have a legal requirement to assess the needs of children who may need extra help due to their eye condition. The assessment, normally completed with parental consent, will look at the impact any visual difficulties may have on your child and immediate family. This includes personal development, social experiences, self esteem and many other aspects of their environment. The assessment covers such topics as mobility, personal care skills, daily living skills and communication. The result of the assessment will be that the social worker will discuss with you, and your child, how these needs can be met before agreeing what to do.

12 Once this assessment has been carried out, specialist social workers can also provide specialist support and advice to the children, family members and other organisations who are working with a young person with sight loss.

The UNOCINI Assessment Framework – understanding the needs of children in Northern Ireland Social workers follow the guidelines of a framework known as the UNOCINI Assessment Framework.

This is a method of assessing the needs of a child or young person. Anyone, in any agency (school, health services, GPs, child development clinic etc), is encouraged to use the same form to note down the needs of a child, and hopefully meet them itself. If the child’s needs are such that they can only be met through the Health and Social Care Trust (HSCT), the form will then be sent to the HSCT for further assessment and support or services.

Once the referral form has been received by the HSCT, further assessment of the child’s needs is carried out. The assessment process is designed to look at all aspects of the child’s life. It helps agencies communicate with each other about children’s needs.

Carers The definition of a carer: “Carers are people who, without payment, provide help and support to a family member or friend who may not be able to manage without this help because of frailty, illness or disability. Carers can be adults caring for other adults, parents caring for ill or disabled children or young people who care for another family member.”

Carers have the legal right to a separate and independent assessment of their own needs. HSC Trusts can provide services that will enable carers to continue in their caring role. This may mean respite or short breaks and support services provided both within the home and elsewhere.

Rehabilitation workers Rehabilitation is a process that aims to help a blind or partially sighted person to achieve the best possible level of independence. Rehabilitation workers for blind and partially sighted people are employed by local social services departments. They assess the individual needs of each blind or partially sighted person and can provide the following services: Explanation of the person’s visual condition. If appropriate, assistance in the process of registration as blind or partially sighted and help to obtain the associated concessions. Advice about daily living activities, mobility, communication (reading, writing, telephone and computer), recreational and social activities. Advice about useful services such as talking books and newspapers or community transport schemes. Assessment for magnification aids. Advice and support regarding school or employment.

13 Advice on minimising the risk associated with impaired vision at home, outdoors and school, or work. Issue of helpful items of equipment. If agreed, referral to other agencies who can help provide help and support such as social worker, occupational therapy, NI Housing Executive, RNIB or local group for blind or partially sighted people. If appropriate, rehabilitation training will be offered in activities of daily living, including kitchen skills; mobility skills and communication skills.

Sensory support contact details Belfast Health and Social Care Trust – BHSCT Sensory Support Service 2nd Floor The Bradbury Centre 1-17 Lisburn Road Belfast BT9 7AA t: 028 9504 0200 f: 028 9091 2196 m: 07738 883 116 (text message only) Minicom: 028 9091 2197 [email protected]

Children with Disabilities Team (Under 18 years of age) Inver Villa Knockbracken Healthcare Park Saintfield Road Belfast BT8 8BH t: 028 9056 5791

Northern Health and Social Care Trust – NHSCT For all referrals, telephone 0845 600 3111

Individual teams

Triangle, Ballymoney and Moyle Rathlea House Mountfern Complex Coleraine BT52 1JL

Antrim and Ballymena Wilson House 17 Raceview Road Broughshane BT42 4JL

East Antrim – Covering Larne, Ballyclare, Carrickfergus and Newtonabbey

14 The Beeches 76 Avondale Drive Ballyclare BT39 9EB

Mid Ulster – Covering Cookstown and Magherafelt Townlands Magherafelt CSC 60 Hospital Road Magherafelt BT45 5EX

South Eastern Health and Social Care Trust – SEHSCT North Down and Ards Sector: t: 028 9151 0136 m: 07734 282 646 Minicom: 028 9151 0137

Down Sector: t: 028 4461 6915 m: 07739 879 556 Minicom: 028 4461 4744

Lisburn Sector: t: 028 9260 7746 m: 07739 879 554 Minicom: 028 9260 3120

Southern Health and Social Care Trust – SHSCT The team covering Craigavon and Banbridge, South Down and East of the Newry canal are based at:

Cherrytrees Resource Centre 1A Edenderry Gardens Gilford Road Portadown BT63 5EA t: 028 3839 4088 f: 028 3839 4095 m: 07834 929 124 Minicom: 028 3839 4738

The team covering Armagh and Dungannon, South Armagh and West of the Newry canal are based at:

Sensory Disability Team Jackson Hall Main Building St Luke’s Hospital Loughgall Road Armagh BT61 7NQ t: 028 3741 2364

15 f: 028 3741 2087 m: 07919 103 501 Minicom: 028 3741 2421

Western Health and Social Care Trust – WHSCT Northern Sector: covering Londonderry, Limavady, Dungiven and Strabane areas

Sensory Support Services Old Bridge House Glendermott Road Londonderry BT47 6AU t: 028 7132 0167 Minicom: 028 7132 0166 [email protected]

Southern Sector Covering Omagh council area, Castlederg area, Enniskillen and Fermanagh

Sensory Support Service Drumcoo Centre Drumcoo Enniskillen Co Fermanagh BT 74 6AY t: 028 6632 4400 SMS: 07795 650 125 [email protected]

Out of hours Regional Emergency Social Work Service: t: 028 9504 9999 SMS: 07799 867 698 RNIB NI Welfare Rights Service Our Welfare Rights Service can help you claim the benefits, tax credits or allowances to which your child is entitled if they are blind or partially sighted.

Claiming your full entitlement The benefits system can seem very confusing. It’s not always easy to know what your child qualifies for or what to write on the form. We offer a confidential benefits check and advisory service free of charge for blind and partially sighted people.

Our qualified advisers can provide information on the full range of social security benefits, tax credits and other allowances or concessions available to people with sight loss. We can assist you in claiming your child’s full entitlement and support you in any appeal you may have to make.

16 Getting in touch You can get in touch with our Welfare Rights Officer by calling 028 9032 9373. Alternatively you can email us directly at [email protected] RNIB NI Products and Advice Service At our shop in Victoria House, Belfast you can browse RNIB’s extensive range of products, all designed to support blind and partially sighted people to live independent lives.

Our products are especially designed to make everyday living and leisure more accessible for people with sight loss – activities that many people take for granted, like: cooking reading staying in touch shopping or getting out and about.

Our experienced team are on hand to offer advice about useful products and services. We can provide help and instructions for use, and set up many items so they are ready to use when you get home.

Events Our staff can provide product demonstrations and/or service information sessions to groups and social clubs throughout Northern Ireland on their own premises, or at our shop in Victoria House. These talks give people a chance to get “hands on” with our specialist products and can be a real insight into the problems faced every day by blind and partially sighted people.

A range of RNIB products are on display at our premises in Derry/Londonderry, Omagh and Coleraine. Just ask our staff if you wish to have a look at what’s available or you want to make a purchase through our shop in Belfast. You can also request a catalogue in braille, large print or audio.

Resource Centre opening hours Monday through Thursday: 9am to 4pm Friday: 9am to 3pm

Getting in touch You can get in touch with our Resource Centre by calling 028 9032 9373. Alternatively you can email us directly at [email protected]

Technology Training Service We offer free technology training sessions to blind and partially sighted people across Northern Ireland. We run introductory sessions to help you decide what device is right for you, and full six-week training courses in how to make the best use of the speech and magnification functions built in to mainstream technology. Book a session to get

17 to know the latest technologies such as tablet computers, eBook readers and smart phones.

You can get in touch with our Technology Training Service by calling 028 9032 9373. Alternatively you can email us directly at [email protected] RNIB National Library Service RNIB have the largest specialised library in the UK for people with sight loss. The library provides the same kind of books you would expect to find in your local library. Anyone with sight loss (or an individual acting on behalf of someone with sight loss) can join the library.

Cost Good news – RNIB’s library is free to join.

Borrowing and choosing books Choose from the library catalogue and borrow six books at a time. The loan period is three months (no limit for talking books) and postage is free. To get an idea of available books, you can browse book lists on our website

Formats There is a wide range of braille books, giant print books and Moon books as well as a great selection of books for children and young people. Braille and giant print sheet music are also available and an online reference library including newspapers, dictionaries and encyclopaedia.

Getting in touch When you join the library, we will automatically set up a personal bookshelf for you. Your personal bookshelf is the list of books you would like to read. You can start adding titles to your list straight away by contacting the Helpline on 0303 123 9999 or email [email protected] Jargon busting This information may help you to put complex visual jargon and measurements into more manageable terms.

Accommodation is the process by which the optical power to maintain a clear image on an object as it draws near the eye. The eyes ability to accommodate gradually reduces over time.

Amblyopia is the term used for a “lazy eye”. It is an eye that has more reduced or poorer vision than the other. Usually an amblyopic eye is a healthy eye that cannot be corrected with glasses (to achieve a “normal level” of vision) due to poor development. Quite often a child with amblyopia or a lazy eye has or can develop a “strabismus” or squint.

18 Astigmatism usually means that the front surface of the eye is shaped like a rugby ball. It is very common in both persons with normal vision and those with impaired vision.

Contrast sensitivity is the direct comparison of one object’s colour or intensity to another, that is a letter chart with black letters on a white background. Parents can sometimes wear bright distinctive clothing, making it easier for their child to pick them out from a crowd.

Electrophysiology measures the amount of electrical activity along the visual pathway. Skin sensors or electrodes are placed on the scalp or eyelid, and a flashing light or checkerboard pattern is shown to the individual. Brain or electrical activity is then recorded via the little sensors. This procedure is painless.

Hypermetropia is a common sight problem that affects someone’s ability to see close- up objects. Commonly known as long-sightedness.

Myopia is short-sightedness, also known as near-sight.

Nystagmus (dancing or wobbly eyes) is an involuntary flickering movement of the eyes, which makes fixation difficult and can reduce reading speed.

An ophthalmologist is a medical eye specialist or eye doctor who deals with diagnosis and the health of the eye, and child. They can also perform surgery and prescribe drug medication as necessary. The ophthalmologist has the ability to request registration for an individual as blind (severely sight impaired) or partially sighted (sight impaired).

An optometrist or optician checks the child’s vision, prescribing glasses and low vision aids as necessary. An optometrist can also assess the health of the eye, make an initial diagnosis, manage some cases or refer a patient if necessary.

An orthoptist will look at the eye movements paying close attention to the eye muscles, and is mainly interested in binocular vision. Orthoptists are involved in the management of squints (were an eye turns in or out) or a lazy eye where the vision is poorer in that eye and patching (of the good eye) is sometimes indicated. They also assess any unusual head tilts associated with nystagmus.

Refractive error is the power or strength of corrective lenses or glasses. This is measured using refraction or a retinoscope.

Stereopsis is the ability to see in 3D. Some children who perform poorly in stereopsis tests may have poor depth perception.

Strabismus is when one or both eyes turn in (Esotropia) or out (Exotropia). Orthoptists specialise with strabismus treatment.

Vision is how well an individual can see, without glasses or corrective lenses.

19 Visual acuity is how well an individual can see objects (letters/symbols) with glasses. This is measured during an eye test and is written as a figure called visual acuity (VA). For example if your child’s VA is 6/24; this means that the child can only see an object at 6 meters which a person with “normal vision” can see at 24 metres.

Visual field is the extent of space in which objects are visible to an eye in a given position i.e. if you fixate on an object in the distance without moving your eye you are still able to see the surrounding landscape. This can be reduced in some individuals to almost a tunnel vision effect (like looking through cardboard tubes).

A visual impairment is a term some people use to describe significant sight loss. It cannot be corrected with glasses. Glasses can improve the vision a little, taking pressure off the visual system and provide a clearer image.

Visual pathway is where light passes from the eye, through the retinal photoreceptors (rod and cone cells), along the optic nerves to the brain, where the picture is received/deciphered. Useful contacts Albinism Fellowship t: 01282 771 900 albinism.org.uk

Angel Eyes NI t: 028 9076 0163 angeleyesni.org

Aniridia Network UK t: 07792 867 949 aniridia.org.uk

Birdshot Uveitis Society birdshot.org.uk

Blind Children UK t: 0800 781 1444 blindchildrenuk.org

Childhood Eye Cancer Trust t: 020 7377 5578 chect.org.uk

Children’s Law Centre t: 028 9024 5704 childrenslawcentre.org

Contact a Family t: 028 9262 7552 cafamily.org.uk

20 Diabetes UK t: 0345 123 2399 diabetes.org.uk

Disability Sports NI t: 028 9046 9925 dsni.co.uk

Eyeless Trust t: 019 0385 7025 eyeless.org.uk

Family Support Hub familysupportni.gov.uk

Guide Dogs for the Blind Association t: 0845 3727 402 guidedogs.org.uk

International Glaucoma Association t: 01233 648 170 glaucoma-association.com

Jordanstown School t: 028 9086 3541 jordanstownschool.org

Leber’s Hereditary Optic Neuropathy (LHON) Society lhonsociety.org

Macular Society t: 01264 350 551 macularsociety.org

Northern Ireland Commissioner for Children and Young People t: 028 9031 1616 niccy.org

Nystagmus Network t: 0845 634 2630 (UK only) t: 029 2045 4242 nystagmusnet.org

RP Fighting Blindness t: 01280 821 334 rpfightingblindness.org.uk

Special Educational Needs Advice Centre Advice line: 028 9079 5779

21 Office: 028 9070 5654 senac.co.uk

University of Ulster Vision Resources biomed.science.ulster.ac.uk/vision/-Vision-Resources-.html

VI ScotlandMedical Information about a number of eye conditions viscotland.org.uk/eyeconds/a-z.html

Wonderbaby Interesting articles written by parents of children with sight loss wonderbaby.org

RNIB Northern Ireland Victoria House, 15–17 Gloucester Street, Belfast BT1 4LS t: 028 9032 9373 [email protected] rnib.org.uk/northernireland facebook.com/RNIBnorthernireland twitter.com/RNIBNI