Low Vision ServicesGroup – Children’s Sub Committee

Modifications to the Department of Health’s Recommended Standards for Low Vision Services – recognising the needs of children and young people and their families.

Presented by a working party from the Low Vision Services Group -Children’s subcommittee based on the outcomes from the 2nd Low Vision Conference 2008

June 2010

A Low Vision Service is a rehabilitative or habilitative process, which provides a range of services for children and young people with low vision to enable them to make best use of their eyesight and visual function to enhance life chances and achieve maximum potential.

This is not just a clinical process but is achieved by professionals from health, education, social care and the voluntary sector working together with children, young people and their families.

The definition of a child or young person with low vision is one who has an impairment of visual function for whom full remediation is not possible by conventional spectacles, contact lenses, medical or surgical intervention. This is likely to have an impact on the child’s development and their interaction with the environment and with other people.

Children and young people with vision impairment are all individuals with unique needs. Age, level of vision, intellectual ability and family circumstances all need to be considered. It is recognised that people learn in different ways, and this is no different for a child with vision impairment.

To access the educational curriculum, a child or young person with low vision needs to be able to access the same environment as that of the fully sighted child. In order to do this, a child or young person may adopt a number of strategies such as bringing the regular text closer to their eyes; they may use low vision aids including spectacles, simple or complex magnifiers or more sophisticated electronic equipment. They may gain confidence through mobility instruction and the use of telescopic devices to get around. The regular print materials may be modified and enlarged to allow access or the child may make additional use of their non visual senses such as using audio-recorded books, tactile markings and diagrams. Most children and young people use a combination of all strategies and services need to encourage and support this across the curriculum, including access to practical subjects and play.

Design principles

1.Low Vision Services should reflect a multi-disciplinary approach that co-ordinates and encompasses or works closely with other health, social care, education and voluntary providers in the area, including services provided at the child or young person’s residence, educational setting or other appropriate location. This will ensure a child centred approach that will improve outcomes for all children and young people with low vision. These outcomes reflect those universal ambitions identified by the Government’s “Every Child Matters” and “Aiming High for Disabled Children” agenda.

2.The services delivered should be based upon need identified by children, young people and their families and be sufficiently flexible to meet their disparate needs, including those of children and young people with additional disabilities and from diverse populations. There should be evidence of children, young people and family involvement in the setting up and implementation of pathways and protocols. For example, focus groups with children and young people, which professionals working in education and rehabilitation are in an ideal position to facilitate.

Children and young people should be assessed in a child-friendly environment andif for example this is in a clinical setting, sessions for children and young people should be held separately from adult clinics.

3.Registration as sight impaired or severely sight impaired should not be a pre-requisite to accessing Low Vision Services.

4.Locally designed guidelines, pathways and protocols should be underpinned, whenever possible, by evidence based knowledge and accepted guidance. This should conform with and contribute to local governance arrangements for health, education and social care.

5.Timescales should reflect the needs of children, young people and their families at specific stages of their development.

  • All members of the team should recognise the importance of early intervention and appropriate transition planning
  • Children, young people and their families should be advised of current waiting times along with highlighted ‘not later than’ times/dates (e.g. we will contact you no later than: day/month/year). Contact should ideally be made within 10 working days

Note: Local commissioners and service providers will need to identify and agree acceptable timescales for each part of the service, including re-assessment. Parents and carers need to be informed of these.

  • A child’s low vision needs should be regularly reviewed

Local arrangements should be drawn up in line with the UK Vision Strategy. Children, young people and their families may access services via a number of routes but all agencies involved should recognise that child-centred Low Vision Services ought to offer the following:

  • Provision of information and a description of all services contributing to multi-disciplinary low vision care (health, education, social care and the voluntary sector)
  • An outline of the processes involved, and what is likely to happen. This should include ‘age-appropriate’ information for children and young people
  • Access to help, advice and a support line, ensuring appropriate formats and languages used .This could be access to a national or local service
  • Details of current waiting times and the likely duration of each stage of the assessment process
  • Access to counselling and other appropriate emotional support services. (Note: it may be appropriate for a child or their family to access counselling or help line services urgently – such facilities need to reflect the specific emotional needs of young people and their families)
  • A co-ordinated, multi-disciplinary approach in all aspects of the service, irrespective of where and when a child or young person engages with Low Vision Services

It is essential that all people working with children, young people and their families have an appropriate check carried out in line with the Independent Safeguarding Authority requirements.

Referral, assessment and service

6.Referral to Low Vision Services should be open to any health, education or care professional based upon locally developed guidance. This should also include self referral and subsequent requests for review.

The local guidance should be devised with input from local professionals including ophthalmologists, optometrists, dispensing opticians, orthoptists, specialist education services for children and young people with vision impairment, paediatricians, occupational therapists, general practitioners, rehabilitation workers, social care , voluntary services, children, young people and their families and any other professional groups identified at a local level that provide services to children and young people.

7.Children, young people and their families should be able to access the service irrespective of the degree of sight loss or reduction in vision, as early as possible to minimise impact on quality of life and help achieve the 5 outcomes in Every Child Matters.

The perception of what constitutes a restriction in a child or young person’s everydaylife will vary between individuals. It is therefore unwise to define strict limits toaccess services based upon clinical or social criteria.

8.It is essential that there is a diagnosis, or at the very least a working diagnosis, of the associated eye and/or systemic condition(s). Practitioners should ensure that all appropriate medical interventions are being or have been employed. Patients and their families must be given appropriate and understandable information regarding the importance of a medical eye examination, as well as their particular condition. Diagnosis can occur either prior to or simultaneous to accessing the Low Vision Service.

Children, young people and their families may refuse to be referred to another professional at any stage of the process, even if informed it is in their best interests. If this situation arises, the records should be documented accordingly and information given about how to proceed with referral at a later stage.

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9.At the point of initial contact with Low Vision Services appropriate comprehensive and accessible information should be provided about the range of services available.

If a service is declined (whether by intention or default) on behalf of the child or young person it must recognised that their needs are paramount and every effort should be made to understand the reasons for declining the service and appropriate alternatives presented. They should not be placed under any pressure to accept a service against their express wishes. However measures should be put in place to ensure that this decision is a matter of choice and not due to practical obstacles to accessing the service such as transport difficulties or communication problems.

Services must ensure that a child or young person who is capable of forming their own view has the right to access services – recognising their view may differ from that of their parents or carers. This is in line with the United Nations Convention on the Rights of the Child. Article 12. If any aspect of low vision care is refused and there is concern about the safety or welfareof the child or young person, then Local Safeguarding Children Board procedures should be followed or contact made with the local safeguarding or child protection team.

Once a child or young person has been referred to any component of the Low Vision Service, a full assessment of their needs should be undertaken. Following this assessment a care and delivery plan can be agreed with the child, young person and their family. It will be necessary to regularly review the range of services to consider appropriateness and whether other services might be indicated. It is therefore crucial that all stakeholders involved in providing the Low Vision Service have clear methods of communication with one another and have obtained consent such that they can share information.

10.The exact content of the Low Vision assessment should be subject to local agreement/protocols and include all aspects of a child or young person’s needs relating to health, social care and education as appropriate. A Low Vision assessment needs to utilise a range of child appropriate assessment tools and should always offer:

  • An eye health examination, or evidence of recent examination or referral for examination according to local protocols
  • An assessment of visual function (see appendix 1). This assessment should be based on learning, home and leisure needs. It can be undertaken by a number of professionals, in a multi-disciplinary approach centred around the child
  • The assessment must be reviewed regularly throughout childhood, at least annually. Particular attention should be given to transition stages

11.The following should be offered, as appropriate to the child or young person, following assessment:

  • Prescription/provision of appropriate optical/non optical aids. The sale and supply of some low vision aids is restricted to certain professionals (see appendix 2) or require appropriate supervision. The supply/ loan of aids should be governed by local protocol.
  • Advice on lighting, contrast and size, filters, tactile aids, electronic aids and other non-optical aids (see appendix 3)
  • Training and/or therapy to enable optical and non- optical aids and other techniques to be used effectively.
  • If the assessment is not multi-disciplinary it must link into broader rehabilitation and support services for the child or young person and their family such as home assessment and mobility, education support services and employment services as well as possible referral to structured therapy programmes and/ or counselling
  • Care must be taken to ensure appropriate support is in place for transition
  • A review of benefits, welfare rights, concessions, support groups, (both local and national) - Website links: ,

Information

12.Information should be provided in a format that is appropriate to the needs of children young people and their families. The information should enable informed decisions about care to be made.

Note: Standard 7 ‘Progress in Sight – National Care Standards of social care for visually impaired adults’. ADSS Oct 2002 highlights the need to present information in a variety of formats including the recommendation that written material should be presented in a clear typeface with a minimum 14 point font size.

13.Information should be communicated to the child or young person, their family or carers and with prior consent to relevant professionals involved in providing care for a child or young person e.g. GP, health visitor, educational settings and support services for children and young people with a vision impairment as well as the referral source. Information should be in an accessible format for all individuals.

14.All professionals interacting with a client within a Low Vision Service should use a health/care record, which can be shared, with appropriate prior consent.

Service improvement, monitoring and evaluation of the service

15. Local commissioners from health, education and social care will need to work together to ensure that service improvement, modernisation techniques and learning from related areas are considered, implemented and evaluated.

It is also important to co-ordinate appropriate measures and compatible recording systems to identify the current position, have on-going information about number of children and young people referred, demographics (as relevant to children and young people), inter-professional communications as well as provision of data to allow evaluation of the service. Mechanisms should be in place to ensure that monitoring continues across transition stages. Some of this information will already be collated by the commissioning organisations but in some cases more detailed audits may be necessary. Children, young people and their families must be involved in these processes. Innovative ideas should be developed to ensure feedback is obtained from them.

16. Local commissioners produce an evidence based concise annual report on the service, which should be available in the public domain and in language that can be readily understood by young people and in Braille and large print formats accessible to children and young people with vision impairment.

Training

17.All persons who wish to participate in Low Vision Services should be suitably trained. Any training programme should be designed to

  • Facilitate the participation of children, young people and their families
  • Meet the needs of the local service
  • Ensure quality and a seamless service between health, education, social care and the voluntary sector
  • Include knowledge of working with children, young people and their families who have learning, communication and multiple disabilities.
  • Acknowledge the specific needs of BME communities
  • Be a mechanism for ongoing accreditation

18.Training programmes should reflect lessons learnt from monitoring and evaluation and include feedback from children, young people and their families

19.Training should be of a multi-disciplinary nature, ensuring all persons involved understand the different and related roles.

Communication

20.Effective Low Vision Services rely on good communication between all parties to ensure high quality seamless care.

21.Whilst confidentiality must be respected, providing there is parental permission, information regarding children, young people and families should be shared on a ‘need to know’ basis.

Appendices:

Appendix 1

Low Vision Assessment

1.History
  • Birth and development
  • Visual
  • Ocular
  • Medical
  • Social
2.Symptoms
  • Visual including visual perceptual difficulties
  • Ocular
  • Medical
  1. Impact
  • The child and their environment
  • Social impact
  1. Current situation
  • Devices
  • Support
  • Treatment
5.Assessment of needs/goal setting
  • Distance
  • Near
  • Mobility
  • Independent Daily Living Skills
  1. Visual function measurement
  • Best corrected distance vision using LogMAR chart
  • Distance refraction or verification of distance prescription
  • Intermediate vision and/or other relevant working distances if appropriate
  • Best corrected near vision
  • Accommodation if relevant
  • Near refraction of verification of near prescription
  • Binocular function if relevant
  • Contrast sensitivity
  • Colour vision if appropriate
  • Central visual function if appropriate
  • Visual field assessment if relevant
  • Assessment of glare function
  1. Prescription of devices
  • Establishing magnification and low vision aid assessment
  • Calculation and trial of low vision aids
  • Dispensing of the devices
  • Training in use of devices
  1. Further management
  • Follow up
  • Advice and onward referral if necessary
  • Ensuring a clear route for review
  • Report writing and documentation

Appendix 2:

Personnel involved in Children’s and Young People’s Low Vision Services:

  • Children, young people and their families
  • Dispensing Opticians (1)
  • Education services (QTVI’s, SENCO’s, early years support staff)
  • General Practitioners (1)
  • Occupational Therapists
  • Ophthalmic nurses
  • Ophthalmologists (1)
  • Optometrists (1)
  • Orthoptists
  • Paediatricians
  • Counselling Service
  • Rehabilitation workers/ Officers
  • Social Workers
  • Voluntary Workers

(1) The supply of certain appliances is restricted to these professionals, including spectacles and spectacle mounted aids.

It has been suggested that effective practice is more likely where services have:

  • An Early Support or a ‘Team around the Child’ approach
  • Established multiagency groups with a focus on visual impairment
  • Secured the appointment of a paediatric ophthalmologist to lead onchildren's issues
  • Attendance by vision impairment professionals (from education) or Eye Clinic Liaison Officer (or similar) at paediatric eye clinics
  • Incorporated hearing and vision services into Local Authority sensorysupport services.

Appendix 3:

Low vision devices and independent living aids. This list is not meant to be exhaustive, but is intended to offer suggestions as to the types of devices that children may use.

1. Optical magnifiers and associated equipment