Visual Impairment Scotland Report
Chapter 12 Conclusions, Future Developments & Recommendations
The conclusions concern two main issues:
- The initial pilot study to establish VIS as a national resource.
The two main aspects of the resource being the support and information service and the database of children with visual impairment.
- The description of the population of children with visual impairment notified.
VIS as a national resource: The information and support services
The children and families registered with VIS now represent the largest support network concerned with childhood visual impairment in Scotland. Over 500 families receive a quarterly newsletter, 499 children are members of the VISKIDS club and over 100 have passwords to access the secure chat room. Through collaboration with international organisations children from Australia, New Zealand and Canada also use the chat room making new friends with Scottish VISKIDS. To complement the newsletter and chat room two successful ?Get Together Days? have been organised in Lothian and Ayrshire with over 100 parents and children attending.
A popular and credible website has been established. Since its launch in April 2001 the site has received over 120,000 visits. Not only parents and children use it but many professionals, in particular teachers and social workers. The site has developed an extensive resource of plain language medical information. This is allowing non-medical professionals the opportunity to inform themselves regarding childhood visual impairment. To date more than 22,000 medical documents have been downloaded from the site. A full copy of this report and other VIS research papers are also accessible on the website.
Over 1,700 of the ‘Where can we go from here? Scotland’ booklets have been distributed to parents, professionals and voluntary organisations throughout the United Kingdom improving the awareness of parents and professionals to the services and benefits available in Scotland.
VIS as a national resource: The electronic notification database
The electronic database acts as an important research tool. It has already allowed the VIS research study group to present and publish several new studies on aspects of childhood visual impairment. This information has highlighted inequalities in some areas of provision which can be targets for improvement in the future. It is also producing information that can aid the Scottish Executive in further developing both the Blind and Partial Sight Registration System and provision of additional support for learning in schools. The database will in the future offer the opportunity to perform unique longitudinal studies on educational attainment and employment characteristics of children with visual impairment.
Causes of visual impairment and additional disabilities
VIS has identified that childhood visual impairment is very different in nature to that of adults. The brain was the single most common site of visual impairment in children and accounted for almost half (47%) of all cases. A great variety of conditions (66 in 333 children) caused visual impairment in children. Most children (83%) acquired the cause of impairment during their first month of life. A greater percentage of children (57%) with additional disabilities were identified by VIS than are recognised by the official blind and partial sight register (20%). Dual sensory impairment was also more common than anticipated (13.8%) and very much higher than the official blind and partial sight register (1.5%) in Scotland. Only very few children identified by VIS (16/333) had visual function of ‘no perception of light’. The use of the term blind to describe the majority of children with visual impairment is therefore unhelpful and inappropriate.
Children with visual impairment consequently require prompt delivery of a coordinated cross-disciplinary habilitation team that is tailored to the complex nature of their needs. Delivery of such a service can improve communication between disciplines and encourage visual and general developmental progress62-64.
Services children received
Children with visual impairment received a wide range of services both from local education, social and health services as well as national voluntary organisations.
VIS collected information on many aspects of service provision. We describe conclusions on the following services:
- Record of Needs Status and Educational Placement
- Computer Use
- Low Vision Aid use
- ‘Other Therapy Services’
- Registration as Blind or Partially Sighted
Record of Needs status and Educational Placement
As expected most children identified were taught in mainstream education. Only a minority of children were taught in special schools. These children were characterised by poorer visual function and a greater burden of additional disabilities. The availability of a visual impairment support unit or resource base varied greatly between children. Less than one third (32%) of children in mainstream were taught in a school with either a unit or a resource base. Over half (54%) the children with visual impairment on the VIS database held a Record of Needs. Most children in special schools, with additional disabilities and no perception of light visual acuity had a Record of Needs. However this study identified three groups of children where there may be inequitable special educational provision as in many children within these groups a legal statement of needs had not been described. These include:
1. Children with Severe Vision Loss
Although there is a clear trend for children with poorer visual function to have a Record of Needs there are still many children (43%) with severe visual loss (NORDSYN visual function groups B and C) who do not have a legal statement of needs. In addition over two fifths (43%) of children deemed to be so visually impaired as to be registered blind or partially sighted by their attending ophthalmologist also did not have a Record of Needs.
2. Children in Mainstream Education
Almost half (46%) of children in mainstream education with visual impairment do not have a legal statement of educational needs.
3. Preschool Children
In preschool children only 10% (5/51) had a Record despite it being well recognised that early co-ordinated educational intervention can lead to positive developmental, educational and visual outcomes.
Most children (81%) in mainstream use computers in school. Use was less in special schools (58%). Although most children in mainstream use computers, less than half (49%) the children with no additional disabilities were taught to touch type. Satisfactory arrangements for maintenance of computers were also often lacking (45%).
Low Vision Aid Use
The overall use of LVAs amongst mainstream school age children on the VIS database is surprisingly low (56%). There is also evidence of inconsistent use between home and school and during transition from primary to secondary school. Children of a developmental age of 2 to 3 years can be effectively taught to use LVAs19 however only 1 of 31 preschool children use one. LVA use is also uncommon (21%) in children with additional disabilities despite the development of effective practice guidelines61. Distance LVAs can be as important to the developmental and educational needs of children as near devices. The use of distance devices was however relatively uncommon (27%) compared to near aids (81%).
Other Therapy Services
Communication of information from assessments by orthoptists, physiotherapists and occupational therapists to teachers was generally incomplete. Speech and language therapists were by contrast very successful in communicating information to teachers.
Registration as Blind or Partially Sighted
There were many children who fulfilled the recommended criteria for registration but not registered (25%) and many who did not fulfill the criteria for registration but who were (50%). It is clear that ophthalmologists are registering children with a wider range of visual disability than that described by the recommendations (which were originally developed for adults).
Children with ‘complex’ cerebral visual impairment (CVI) and additional disabilities were less likely to be registered compared to those with ‘simple’ ocular aetiology without additional disabilities.
This study therefore confirms that the blind and partial sight register is, as has been shown in adults65,66, incomplete and biased to certain populations. It consequently does not identify all those that are in need and therefore cannot act as an effective tool to either plan service provision or perform visual impairment research.
One of the other functions of the official blind and partial sight register is to notify community-based services of new presentations of children with visual impairment with the aim of initiating and coordinating an early and effective cross-discipline habilitation team22.
This study highlights that although most children manifest visual impairment early in life many are registered several years after the onset of their visual impairment (if they become registered at all).
The effect of this delay of notification to community services is unknown although from the evidence currently available14-19 delay in receiving appropriate co-ordinated services could lead to a sub-optimal developmental outcome.
Future developments of the VIS resource to embrace and serve all children with visual impairment in Scotland include:
To Continue to Promote the Notification System and Information and Support Services
VIS aims to continue to promote the notification system to:
- Parents and children
- Social service, medical and educational professionals
- Voluntary organisations
The purpose of promoting VIS to these groups is to ensure further notifications of the broadest spectrum of children with visual impairment from all areas of Scotland.
In particular VIS intends to further collaborate with several key professional groups:
- The Scottish Paediatric Regional Ophthalmology Group
- The Community Paediatric Visual Impairment Group
- The Scottish Branch of Orthoptists
- The Association of Teachers of Children with Visual Impairment
- Scottish National Federation for the Welfare of the Blind By ensuring good links with these groups VIS hopes to establish it as routine professional practice to advise parents to request notification of their child to VIS.
Collaboration with the Blind and Partial Sight Registration System
We plan to inform all parents of children notified to VIS, who are eligible for registration, about benefits of blind and partial sight registration. In addition we will offer advice on how to go about getting registered. This is to ensure that all children who are eligible to receive the benefits accorded by registration do so. In the long term we envisage development towards an integrated system.
Collaboration and Linkage with other Registers
In order to broaden the notification base of children still further and create new research opportunities, VIS intends to further develop collaboration with several other Scottish registers. These include the:
- Paediatric Special Needs System
- Down’s Syndrome Register
- Cerebral Palsy Register
- Information and Statistics Division Birth Weight Data
- Achievements of Deaf Pupils in Scotland Project
By linking with other registers new research projects can be developed to further inform service development.
Strengthen links with the NORDSYN Study Group
VIS aims to strengthen its links with Scandinavian colleagues from the NORDSYN study group. Long term we hope to combine datasets and prepare common publications. Scandinavian children will be invited to also become VISKIDS.
Initiate Parent Network Support Communities
Using the VIS database we aim to develop targeted network support groups by matching children by age group, condition, level of impairment and geographic area.
Medical Information Documents
As new children are notified to VIS we aim to continue developing our tailored medical information documents.
The findings of this study need to be taken into account by the proposed Scottish legislation concerning Additional Support for Learning to ensure future improved legal protection for children with visual impairment.
Effective protocols of identification and referral of children with visual impairment to sensory impairment services need to be established by local authority education services.
Optimal access to information and communication technology needs to be established by local authority education services. (This is in line with recent Westminster government initiatives to widen access to such technology for all school children.)
Formalised communication pathways between other therapy services and teachers warrant development. The successful model of education authorities employing speech and language therapists should be considered for other therapy services.
As effective collaborative working depends on sharing of information we recommend that education, health and social services work to eliminate the current obstacles to sharing of information between disciplines.
To aid effective sharing of information we recommend development of cross-discipline educational meetings both on a local and a national level to develop a common working language for childhood visual impairment.
To improve medical understanding of childhood visually impairing conditions we recommend development of plain language information documents accessible to older children, parents and non-ophthalmological professionals.
Registration System: Notification process
Children who are diagnosed as visually impaired by an ophthalmologist should be promptly notified to community services using clear, formally established lines of communication. (In the first instance it may not be appropriate to use the official blind and partial sight registration system.)
A notification process that caters for children who are suspected of being visually impaired needs also to be developed to ensure that those early in the diagnostic process, whose prognosis is uncertain, are also served.
We recommend that the specific needs of visually impaired children from ethnic minorities are examined and suitable provision made to meet those needs.
We recommend that the Executive examines the process of collecting registration data to ensure its accuracy, particularly in respect of the proportions of children with additional disabilities. In addition, methods should be considered to ensure equitable access to the register and its benefits for all groups of children.
Children notified to VIS were more commonly from higher socio-economic groups. The requirement for voluntary written parental consent (as is necessary for blind and partial sight registration) may have lead to skewing of socio-economic representation. We recommend that the Executive audit the socio-economic profile of the current registration system. If bias is found then methods should be considered to make access to the register and its benefits equitable for all socioeconomic groups.
If a child is registered blind or partially sighted with the local social work department or visual impairment society the local special education services and community paediatric department should also be automatically informed.
If a child is identified by the local special education services or community paediatric department as visually impaired then the local social work department or visual impairment society should also be automatically informed.
To aid this process we recommend the development of multi-agency community-based vision teams to improve identification and assessment of children with visual impairment and to facilitate communication and sharing of information amongst professionals. This will lead to the delivery of coherent, prompt and focused care packages.
Registration System: Promotion of the benefits of the registration system
Efforts should be made to promote the benefits of registration amongst health professionals, parents and children. Development of guidelines that involve ophthalmologists, paediatricians, nursing staff and orthoptists in promoting registration and identifying registering eligible children will further encourage use of the system.
Broadening the current portfolio of benefits to meet the needs of children with cerebral visual impairment will make the system more relevant to this large group of children. Ideally, access to special education and appropriate financial benefits should become an automatic sequel to registration.
Registration System: Assessment, Criteria and Language
Alternative methods of visual function assessment and certification criteria need to be established that emphasise the challenges of assessing young children with visual impairment and additional disabilities. In particular the needs of children with cerebral visual impairment and their specific visual difficulties need to be acknowledged.
Only very few children identified by VIS (16/333) had visual function of ‘no perception of light’. The use of the term blind to describe the majority of children with visual impairment is therefore inappropriate and often unhelpful. To make registration less forbidding and more accessible to children and their parents we recommend that the terms ‘blind’ and ‘partial sight’ should be replaced with a graded continuum of ‘visual impairment’ as recommended in the Report of the Certification and Registration Working Group22. The term blind should ideally be reserved for the small minority of children who have genuine visual function of ‘no perception of light’.
Registration System: Review of BP1 form
Review of the format of the BP1 certification form is necessary to facilitate its completion within the eye department and to improve its function as a means of providing information to the multi-agency team.
We specifically recommend that for children the BP1 certification form should include labelled data boxes for the description of: visual acuity, visual field loss, contrast sensitivity, colour vision, eye movement disorders, and symptoms of ventral and dorsal stream cognitive visual dysfunction.
Completed BP1 certification forms should be forwarded to an independent national coordinating body with responsibility for promptly informing all relevant support agencies of the child’s medical, social and educational status. Information from the form should be held electronically both centrally and locally, to act both as a service planning and visual impairment research tool, as recommended in the Report of the Certification and Registration Working Group.
Low Vision Aid Provision
Collaboration between low vision aid (LVA) clinics and teachers in the development and implementation of training strategies will aid the introduction and reinforce the effective use of LVAs in children with visual impairment. This is with the aim of ensuring comprehensive and equitable provision of LVAs to children in pre-school and mainstream settings and those with additional disabilities where prevalence of use was noted to be particularly low.
To encourage children to continue to use LVAs during transition from primary to secondary school education authorities should implement awareness training for all teachers working with these pupils as well as fellow class mates.
We recommend emphasising the provision of distance LVAs as well as near aids.
We recommend audit of the use of enlarged print in schools to ensure it is being used as a complement to LVA use and not a substitute.
To realise these aims we recommend that multi-disciplinary community based vision teams with integrated budgets and coherent service delivery are set up locally to engage these issues and ensure inclusive and equitable LVA provision.
Development of Community Based Multi-disciplinary Vision Teams
We recommend that health boards and local authorities collaborate and develop multi-disciplinary community based vision teams involving health, education, social work and voluntary organisations. Development of such teams will benefit and promote:
- Prompt notification of children with visual impairment to all relevant professions
- Appropriate broad visual function assessment in familiar community settings
- Communication and sharing of information between disciplines
- Inclusive and tailored educational provision
- Inclusive provision of low vision aids
- Appropriate provision of information and communication technology.