RNIB NI's Looking Ahead, A Parent's Guide (PDF, 560kb)

Master RNIB Booklet_Layout 1 10/09/2012 15:10 Page 1 

LOOKING 

AHEAD 

A PARENT’S GUIDE 

For parents of children 

who are blind or 

partially sighted

Master RNIB Booklet_Layout 1 10/09/2012 15:10 Page 2


1 

Contents 

Introduction 02 

Coming to terms with 04 

your child’s sight loss 

What you can do 06 

Can anyone provide practical 09 

advice at the eye clinic? 

Family Support Officers 11 

Youth Service 14 

Angel Eyes Northern Ireland 16 

Early Years 18 

Going to School – who will help my child? 20 

Education Support 22 

Other Support Professionals 25 

Sensory Support Contact Details 30 

RNIB Library 32 

Jargon Busting 34 

Useful Contacts 39


2 

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.


3 

We have attempted to set out a roadmap of 

services parents and children may encounter 

throughout their own personal journey. While not 

definitive, it provides information on statutory and 

voluntary services provided within Northern 

Ireland. 

Royal National Institute of Blind (RNIB NI) 

produced this booklet through funding allocated 

by the Health and Social Care Board in Northern 

Ireland. 

RNIB NI would like to thank The HSCB for their 

continued support.


4 

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 he or she also has a sight problem, 

this 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.


5 

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 like to 

talk to others about their experiences. 

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 

(www.rnib.org.uk/northernireland) has a 

Parents' Place forum to talk to other parents 

in a similar situation. 

If your emotions are causing you difficulties 

in any way, contact RNIB's Emotional 

Support Service, which offers confidential 

support, information and counselling.


6 

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 services and professionals you can expect to 

encounter on your, and your child’s, journey. 

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 

as simply as possible.


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• 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 authority and 

voluntary organisations? 

• Is there anything further I can do to help 

my child?


8 

• 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? 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.


9 

Can anyone provide practical 

advice at the eye clinic? 

Eye Care Liaison Officer (ECLO) service 

The ECLO service is present at the 12 main eye 

clinics throughout Northern Ireland. The hospital 

staff will normally refer a newly diagnosed person 

to the ECLO who is an immediate point of contact. 

RNIB, via the ECLOs, offer emotional and 

practical support. ECLO’s also receive referrals 

from optometry practices across NI, social 

workers and other sources including self referrals. 

The role of the Eye Care Liaison Officer 

is to provide: 

• Emotional support at point of diagnosis 

or any point thereafter. 

• Onward referral to other services 

(statutory and voluntary sectors). 

• Practical information and advice.


10 

If you wish to speak with an ECLO please contact: 

RNIB NI 

40 Linenhall Street 

Belfast 

BT2 8BA 

Tel: 028 9032 9373 

Email: ecloni@rnib.org.uk


11 

Family Support Officers 

The Wraparound Project in the Southern Health 

and Social Care (HSC) Trust area and the Family 

Support Service in the Northern HSC Trust area 

support children with disabilities, their families and 

the professionals involved through joined-up and 

multidisciplinary working. These projects seek to 

improve the quality and accessibility of services 

for children with sight problems (including those 

with additional difficulties) through the work of the 

Family Officers. 

• Information and Advice 

Give parents the information they need 

regarding sight loss. 

• Child and Family Events 

Work in partnership with Angel Eyes NI to 

arrange events for children and families to meet 

and share experiences in a relaxed and 

enjoyable way. These include family information 

weekends and fun days out.


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• Emotional support for Parents 

Provide emotional support for parents and 

opportunities for them to meet and talk. 

• Support for young people with sight loss 

Work with youth groups within RNIB NI and 

Wraparound, to ensure the voice of young 

people with sight loss is heard. 

• Referral to benefits advice services 

For more information contact: 

RNIB Northern Ireland 


Belfast 

BT2 8BA 

Wraparound Family Officer 

Tel: 028 9032 9373 

Mobile: 079 3930 0949 

Northern Trust Family Officer 

Tel: 028 9032 9373 

Mobile: 077 7269 3446


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Email: childrenyouthni@rnib.org.uk 

Join us on Facebook: 

www.facebook.com/RNIBNorthernIreland 

RNIB 

RNIB Northern Ireland and Isle of Man 

supports children and adults with sight 

loss to live full and independent lives. 

We provide a range of services for people 

living with sight loss, as well as walk-in 

resource centres. 

Our campaigning work aims to promote and 

improve the rights of blind and partially 

sighted people in Northern Ireland.


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Youth Service 

RNIB NI’s Youth Service is aimed at young 

people aged 4-25. We support young blind 

and partially sighted people to lead fulfilled 

and independent lives. 

Activities can include 

• Residentials 

• Day Events 

• Duke of Edinburgh Award 

• Weekly football club in Lisburn 

• Confidence building and assertiveness courses 

• Sport and leisure events 

• Taster sessions in the activity of your choice 

• Visual awareness training for your 

school/youth group/sports club 

For more information 

contact 028 9032 9373


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Share Holiday Village 

The Share Holiday village 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. 

RNIB NI owns a chalet at Share with en-suite 

bedrooms, central heating for year round use and 

comfort and a self catering kitchen. The Chalet 

can hold 12 - 14 people. 

The Chalet is available to rent and for 

more information please contact RNIB NI 

on 028 9032 9373.


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Angel Eyes Northern Ireland 

Angel Eyes NI is a charity that supports parents 

in Northern Ireland who have a blind or partially 

sighted child or children. Angel Eyes NI is a 

network of parents throughout Northern Ireland 

who support other parents, organise family days 

out and run education days. 

Angel Eyes NI run: 

• six family days per year 

• two Educational days for parents per year 

• provide an emotional support network 

for parents 

• refer onto other appropriate services 

and agencies 

• inform parents of types 

of services available 

to them


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The aim of Angel Eyes NI is to: 

1. Empower parents with information and support 

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. 

Contact: 

Angel Eyes NI 

PO Box 1219 

Belfast, BT4 9DB 

Tel: 028 9076 0163 

Mobile: 077 3505 9763/074 1148 8897 

www.angeleyesni.org 

www.facebook.com/pages/Angel-Eyes-NI


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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 he/she 

begins to develop a sense of the variety of 

words. 

• Encourage your baby to explore objects with her 

or his 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 

he/she begins to make associations.


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• When you want to show your baby something, 

try to relate it to what he/she knows. 

• Give your baby hands-on experiences. 

• 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. 

Resource Centre 

Products at RNIB NI's resource centre are 

especially designed to assist blind and 

partially sighted people with everyday living 

tasks that can be simplified or made more 

accessible. The product list also includes a 

large selection of early years toys and 

games for young children. 

Resource Centre enquiries and orders: 

Email: resourcecentre.belfast@rnib.org.uk 

Tel: 028 9032 9373


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Going to School 

– who will help my child? 

It may be the case that when your child is about 

to go to school, he/she may need help beyond 

what their teachers will be able to provide. 

A Statement of Special Educational Needs 

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.


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How are statements given? 

Your child’s Statement of Educational Needs will be 

carried out by your local Educational and Library Board 

(ELB). Ask for a Statutory Assessment if you believe: 

• 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 board 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.


22 

Education Support 

Qualified Teacher for the Visually 

Impaired (QTVI) 

QTVI 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. 

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


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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 e.g. braille, ICT; 

• Advice regarding special consideration/ 

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.


24 

Technology Loan Library 

The QTVI can apply on behalf of a student, to 

borrow selected specialist technology from the 

Technology Loan Library. This is located at the 

Regional Vision Resource Base and was 

donated by RNIB NI. This technology is 

available for trial by the student for a school 

term, after which the Education Board will 

make an informed decision regarding the 

purchase of this specialist technology for the 

student concerned.


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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 the immediate family. This includes personal 

development, social experiences, self esteem and 

many other aspects of their environment and 

supports available. 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. 

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.


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The UNOCINI Assessment Framework - 

Understanding the Needs of Children in 

Northern Ireland 

Social Workers in NI 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, 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, the form will then be sent to the local Health 

and Social Care Trust to refer a child for further 

assessment and support or services that can only 

be reached through the Trust. 

Once the referral form has been received by the 

Trust, 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.


27 

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. 

Trusts can provide services that will enable 

carers to continue in their caring role. 

This may mean respite/short breaks 

and support services provided both 

within the home and elsewhere.


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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/newspapers or Community Transport 

Schemes.


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• Assessment for magnifying aids. 

• Advice and support regarding school or employment. 

• 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 NI 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 

• Communication skills


30 

Sensory Support Contact Details 

Belfast Trust Area Northern Trust Area 

Tel: 028 9504 9200 Tel: 028 7936 5018 

Western Trust Area 

Londonderry, Limavady, Dungiven & Strabane 

Tel: 028 7132 0167 

Omagh, Castlederg, Enniskillen and Fermanagh 

Tel: 028 6632 4400 

Southern Trust Area 

Craigavon and Banbridge, South Down 

and East of the Newry canal 

Tel: 028 3839 4088 

Minicom: 028 3839 4738 

Mobile: 078 3492 9124 

Armagh and Dungannon, South Armagh 

and West of the Newry canal 

Tel: 028 3741 2364 

Minicom: 028 3741 2421 

Mobile: 079 1910 3501


31 

South Eastern Trust Area 

North Down and Ards 

Tel: 028 9051 0136 

Minicom: 028 9151 0137 

Mobile: 077 3987 9556 

Lisburn 

Tel: 028 9260 7746 

Minicom: 028 9260 3120 

Mobile: 077 3987 9554 

Down 

Tel: 028 4461 6915 

Minicom: 028 4461 4744 

Mobile: 077 3987 9556


32 

RNIB Library 

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


33 

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 music is also available and an online 

reference library including newspapers, 

dictionaries and encyclopaedia. 

Contact 

Telephone: 0845 702 3153 

Email: library@rnib.org.uk 

Website: www.rnib.org.uk


34 

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. 

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.


35 

Contrast Sensitivity is the direct comparison 

of one object’s colour or intensity to another 

i.e. 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 / 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.


36 

An Ophthalmologist is a medical eye specialist 

or eye doctor who deals with diagnosis and the 

health of the eye, and child. They also can 

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 some times indicated. 

They also assess any unusual head tilts 

associated with nystagmus.


37 

Refractive Error is the power or 

strength of corrective lenses / glasses 

necessary. 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/ corrective lenses. 

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 

needs to be 6 meters away from an object 

which a person with ‘normal vision’ can 

see at 24 metres.


38 

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 this 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, 

were the picture is received / deciphered. 

V.I.Scotland 

VI Scotland has medical information about 

a number of eye conditions, aimed at parents. 

Their website address is: 

www.viscotland.org.uk/eyeconds/a-z.html


39 

Useful Contacts 

Albinism Fellowship 

Tel: 012 8277 1900 

www.albinism.org.uk 

Angel Eyes NI 

Tel: 028 9076 0163 

Mobile: 077 3505 9763/ 074 1148 8897 

www.angeleyesni.org 

Children’s Law Centre 

Tel: 028 9024 5704 

www.childrenslawcentre.org 

Contact a Family 

Tel: 028 9262 7552 

www.cafamily.org.uk 

Disability Sports NI 

Tel: 028 9038 7062 

www.dsni.co.uk 

Eyeless Trust 

Tel: 019 0385 7025 

www.eyeless.org.uk


40 

National Blind Children’s Society 

Tel: 012 7876 4764 

www.nbcs.org.uk 

Northern Ireland Commissioner 

for Children and Young People 

Tel: 028 9031 1616 

www.niccy.org 

Nystagmus Network 

Tel: 0845 634 2630 (UK only) 

Tel: 029 2045 4242 

www.nystagmusnet.org 

Special Educational 

Needs Advice Centre 

Tel advice line: 028 9079 5779 

Office: 028 9070 5654 

www.senac.co.uk 

The Guide Dogs for the 

Blind Association 

Tel: 0845 3727 402 

www.guidedogs.org.uk

Master RNIB Booklet_Layout 1 10/09/2012 15:10 Page 41


RNIB Northern Ireland 


Belfast 

BT2 8BA 

Tel: 028 9032 9373 

Email: childrenyouthni@rnib.org.uk 

Web: www.rnib.org.uk/northernireland 

Facebook: www.facebook.com/RNIBNorthernIreland

RNIB NI's Looking Ahead, A Parent's Guide (PDF, 560kb)

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