The All-Wales Integrated Pathway for Children and Young People (0 to 25 years) with Vision Impairment, and their Families

This document is based on the Pathway written by the Children and Young People’s subgroup of VISION 2020 UK, which is endorsed by VISION 2020 UK as the agreed provision pathway from the point of diagnosis of a visual impairment to adulthood. It has been through an extensive consultation process with stakeholders in Wales and has been adopted by the Welsh Government as the key Pathway integrating other pathway documents relating to the provision of services for children and young people with visual impairment.

The All-Wales Integrated Pathway follows 7 steps, starting with diagnosis of visual impairment, and incorporates the full range of support that is provided by Health, Education and Social Care professionals as well as the Voluntary Sector. It is shown, on page 2 of this document, as linear pathway. However in practice children, young people and their families may join and/or leave at any stage - particularly in the case of an alteration in their level of sight - and move upwards and downwards on the pathway.

The Pathway is underpinned by two basic principles, represented by arrows spanning the length of the pathway:

Early / Timely Support and Key Working. This means practical support being there throughout the journey at whatever age the journey begins. It means the allocation of a Key Worker where necessary to ensure that, in complex situations, there is a professional who can support the family and ensure co-ordination of support from the agencies involved;

Emotional support for Children, Young people and their families / carers at what may be times of confusion, concern and stress.

It is recommended that this Pathway is used in Wales as a central ‘spine’ from which other pathways for areas of supporting activity may be developed.

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The Visual Impairment Pathway Overview:

More detailed descriptions of each step of the pathway follow in subsequent sections of this document.

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Assessment of vision impairment and/or related conditions by specialised services

Identification of potential vision impairment

Certification and Registration (where eligible)

Statutory Needs assessment and development of action plan (education, health and social care)

Service Provision – Health, Education, Social Care, Voluntary Sector

Regular review and updating of provision

Transition into Adult Pathway

Em

otional Support for C

YP

and families / carers

Early / Tim

ely Support and K

ey Working

Detailed Pathway Step Guidance:

1. Identification of potential vision impairment

Potential vision impairment may be discovered during neonatal screening, the 6 week red reflex test, during early school screening at age 4/5 years or through practical observations by carers and/or teachers. There will be many ways in which potential vision impairment will manifest, but all the following should trigger referral to the next stage:

For infants:

Any parental or family concerns; Positive family history of visual impairment in close relatives; Failure at neonatal / 6 week red reflex test; Unusual appearance of one or both eyes, including white pupil; Unusual eye movements including nystagmus;

Lack of visual responsiveness; Severe photophobia;

Failure of the child to make eye contact with parent; Failure to meet milestones; Manifest squint; Any diagnosed neurological condition or developmental delay; Diagnosis of condition associated with visual impairment (e.g. deafness,

Stickler syndrome, Marfan’s etc.).

For older children, in addition to the above:

Failure to meet expectations in school; Screwing up of eyes or holding work exceptionally close; Bumping into objects when mobile; Difficulty with stairs and steps or other obstacles; Persistent / excessive closing or rubbing one eye;

2. Assessment of vision impairment and / or related conditions by specialised services

For infants and pre-school children, referral should be to the HES paediatric services. For most children, standard ophthalmology referral will be appropriate, and (in cases in which simple refractive error might explain

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the concerns) a local optometry referral will be suitable. In other cases HES paediatric services may refer directly to a paediatric ophthalmologist.

The following signs should trigger emergency referral:

Failure at neonatal / 6 week red reflex test; Appearance of white pupil; Positive family history of retinoblastoma. Sudden visual loss, media opacity at any age, severe ocular trauma,

abusive head trauma, papilloedema, acute onset incomitant strabismus, orbital cellulitis, infectious keratitis, uveitis or other sight threatening problem.

Functional vision assessments may be carried out by a Habilitation Officer, or Qualified Teacher of Visually Impaired Children and Young People (QTVI) as required.

The Low Vision Service Wales is a Welsh Government funded service, based within high street optometric practice which can support children who have a vision impairment.

The low vision assessment includes identification of difficulties caused due to vision and supply of vision aids which may help. Low vision practitioners have very close links to rehabilitation officers for the visually impaired and education. The appointment is free at point of contact and there is no charge for any aids loaned to patients. patients are entitled to a full appointment every 12 months.

3. Certification and Registration (where eligible)

There is a legal requirement, under the Social Services and Well-being Act, for Local Authorities to establish and maintain a register of all people (including children) who are registered as Sight Impaired or Severely Sight Impaired in their area.

Certification can only be made by an ophthalmologist. Visual acuity criteria may not be applicable to young children, and instead, the ophthalmologist will use judgement to determine whether the following criteria are applicable, or will be applicable when the child is older:

a person can be certified as severely sight impaired if they are “so blind as to be as to be unable to perform any work for which eye sight is essential”;

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a person can be certified as sight impaired if they are ‘substantially and permanently handicapped by defective vision caused by congenital defect or illness or injury’.

It is important that a diagnosis of visual impairment, whether eligible for certification or not, triggers a referral to the Education Authority’s Visual Impairment Service. This is needed even in cases in which the child or young person is already supported under the system of Special Education Needs / Learning Difficulties and/or Disabilities (LDD).

4. Statutory Needs Assessment and development of action plan (education, health and social care)

Central to the Social Services and Wellbeing (Wales) Act 2014 is the duty to promote a person’s well-being in relation to the following;

a) physical and mental health and emotional well-beingb) protection from abuse and neglectc) education, training and recreationd) domestic, family and personal relationshipse) contributions made to societyf) securing rights and entitlementsg) social and economic well-beingh) suitability of living accommodation

In relation to a child, wellbeing also includesa) physical, intellectual, emotional, social and behavioural developmentb) ‘’welfare’’ as the word is interpreted for the purposes of the Children

Act 1989

Section 21of the Act introduces a duty to assess the needs of a child in need of care and support And Section 27 places an enforceable duty on local authorities to provide all children with the care and support they are assessed as needing under the eligibility criteria.

Joint commissioning arrangements must cover the services for 0 -25 year old children, young people and young adults with SEN or LDD.

Plans for education, health and social care support should be based on a full and thorough understanding of the needs of the child, young person or young adult, and their implications.

Barriers to development and achievement should be identified and measures put in place to address them.

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Effective person centred approaches are required in identifying and meeting needs. Children, young people, young adults and parents and carers should be fully involved in the assessment and planning process.

Identification and assessment should take place at key phases, for example pre-school, end of the Foundation Phase, Key Stage 2, Key Stage 4 and Post-16.

5. Service Provision for Children, Young People and young adults (0 to 25 years)

Children, young people and young adults with Visual Impairment may be entitled to the following support from statutory services:

Health Eye screening to take place at neonatal, 6 weeks and 4-5 years of age; Premature infants screened in neonatal period Specific medical medical conditions screened according to guidelines Clinical assessment and diagnosis; Care plan with documented interventions (including access to genetic

counselling and opinion); Suitable involvement of paediatric, genetic and eye care services; Health professional advice to education and social services; Low vision assessment with provision of, and training / support to use,

prescribed Low Vision aids and equipment; Planning and support for the transition to adult health services.

Education Specialised educational provision by qualified staff from birth to 25

years, to include specialist assessments and interventions from:

o Qualified teacher of the visually impaired (QTVI);o Habilitation worker;o Access to appropriate / relevant learning resources;o Training and advice for mainstream professionals.

Monitoring and input into skills development, social participation and wellbeing;

Input to the transitions review and transition plan including provision of information, advice and guidance.

Social CareAssessment of Needs that may result in:

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A Care and Support plan with documented interventions including habilitation and promotion of independence skills;

Advice and information, including on welfare rights and benefits; Adaptations needed in the home; Direct payments for 1:1 support; Leisure and play opportunities; Respite and short breaks for disabled children; Planning and support for the transition to adult social care services.

Voluntary SectorIn addition they may have access to the services from the voluntary sector – either through National Sight Loss Organisations with services for children or Local Societies for the Blind across Wales. These services aim to complement, not substitute for, those available from Health, Education and Social Care. They may include:

Facilitation of peer support and mentoring; Specialist VI input into all sectors; Key working, where appropriate; Provision of information and advice; Advocacy and mediation; Provision of recreational and leisure opportunities; Support to individuals, parents / carers, siblings, extended family

members, professionals and communities; Influencing policy and practice, including monitoring of provision and

‘holding to account’; Public education and awareness.

6. Regular Review and Updating of ProvisionIt is important that any services provided as a result of action planning are regularly reviewed to ensure that they meet the needs of the Child, Young Person or Young Adult. For education this may be done as part of the Individual Educational Plans; or reviews of Statements of Special Educational Need / Individual Development Plans . Health and Social Services should also provide regular review points.

It is essential that all professionals have opportunity to plan together so that services provided are complementary and fully meet the needs of the child, young person or young adult and their family.

7. Transition into Adult Pathway

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Transition into adulthood happens at different ages for different services and this can cause concern as the known professionals and environments of the paediatric services are exchanged for adult ones. It is essential, therefore that:

Children and Young People and their Parents / Carers are kept informed of the changes ahead of time and are given the names of the professionals who will be working with them;

Professionals ensure that full records are passed from paediatric to adult services and follow up appointments made in order that the CYP, young adults and their families can meet the new professionals;

Where possible (for example in education) new environments are visited ahead of time to ensure minimum stress for all concerned.

Glossary of Terms used: Qualified Teacher of Vision Impaired Children (QTVI): QTVIs have additional training to gain the mandatory qualification in working with children with vision impairment, and can work in special and mainstream schools and colleges or within local authority vision impairment service teams in an advisory or teaching role, including working in home settings.

Habilitation: the acquisition of mobility, orientation and other independent living skills in relation to children and young people born with vision impairment or who acquire it during childhood. A qualified habilitation specialist is the lead specialist in delivering this training. He/she is responsible for assessing the habilitation needs of the child and all aspects of the training programme. They work with the young person, their family, and other professionals, such as specially qualified teachers to ensure a joined up approach.

Early support: is a way of working, underpinned by 10 principles that aim to improve the delivery of services for disabled children, young people and their families. It enables services to coordinate their activity better and provide families with a single point of contact and continuity through key working. It focuses on ensuring that service delivery is child, young person and family centred and that services and practitioners work in partnership with children, young people and their families.

Keyworking: is an approach to support defined by a set of functions, such as navigating, enabling, co-ordinating. The overall aim of key working is to ensure the provision of holistic care and support to meet the individual needs

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of the child and their family. The care and support should be family-centred, not only child-centred. The individual offering key working support should strive for an open and supportive relationship with the child and their family, and this should be developed through regular and proactive contact.

Screening: Screening is aimed at the primary prevention of visually impairing disease in a target population (such as retinopathy of prematurity in neonatal unit babies) as well as reducing the impact of already established disease (such as congenital cataracts in the general population). National advice on screening programmes is set out by the National Screening Committee, which recommends all new-born and 6-8 week old babies should be examined as part of the routine review to exclude cataract and other abnormalities. All children should be screened for vision impairment between four and five years of age by an orthoptist-led service.

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