University of Edinburgh

Visual Impairment Scotland Report

Some conclusions from the VI Scotland Report - Executive Summary

1. In response to an application to the Scottish NHS Innovations Fund a three-year grant, commencing in late 1999, was awarded, to pilot a new notification system for children with visual impairment throughout Scotland. The project is called ‘Visual Impairment Scotland’ (VIS).

2. The VIS project has two complementary aims:
a. To pilot a comprehensive notification system for children with visual impairment.
b. To develop support and information service tailored to children’s needs.

3. A unique feature of the VIS model of notification is that it is parent-led.

4. A well used support and information service has been developed: Between 21 March 2001 and 31 October 2002 there were 62,675 visits to the project website. 76 separate medical information documents were written and 8,138 documents have been downloaded from the website.

5. An important result of focus groups was that parents felt children would benefit from their own website and children’s club, as a result VISKIDS was developed.

6. A safe and secure internet chatroom was developed which, at the time, was the UK’s, Europe’s and possibly the World’s only safe and secure chatroom for children with visual impairment.

7. The Chatroom won the 2002 Computing Industry ‘Special Ability Award’. This award recognises those who have done most to alleviate disability in the community by enabling disabled people to overcome their disabilities.

8. Between 21 March 2001 and 31 October 2002, 436 families received a regular newsletter, 380 children joined the VISKIDS club and 74 children requested passwords to use the Internet chatroom. (This number is increasing each month and at the time of writing 600 families have now been notified.)

9. 333 of 436 children were under 16 years of age and met the criteria for ‘significant visual impairment’ and children were notified from all parts of Scotland.

10. Most children with visual impairment (57.1%) had another disability in addition to visual impairment.

11. 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.

12. Children who acquire visual impairment around the time of birth develop more additional disabilities (89%) compared to children who acquire visual impairment before birth (42%).

13. Children with visual impairment due to a condition of the brain were much more likely (86%) to have additional disabilities than children whose visual impairment was due to the eye or optic nerve (31%).

14. Cerebral Palsy and Cerebral Visual Impairment were the most common (22%) conditions leading to childhood visual impairment.

15. From the Educational forms returned less than half of the children with visual impairment (46%) were subject to a Record of Needs. Over two thirds of children (67%) received their first visit from a VI teacher before the age of 5 years. But less than one third of children with visual impairment attending mainstream education have access to either a visual impairment resource base or unit within their school.

16. Of the 333 children with ‘significant visual impairment’ 198 (59%) were registered either blind or partially sighted.

17. Once a child was confirmed to be visually impaired it took, on average, 3 years for them to become registered blind or partially sighted.
Conclusions and Recommendations

18. The children and families notified with VIS now represent the largest support network concerned with childhood visual impairment in Scotland.

19. Over 600 families receive a quarterly newsletter, 560 children are members of the VISKIDS club and over 100 have passwords to access the safe and secure chatroom.

20. The electronic database acts as an important research and planning tool. It has already highlighted inequalities in service provision which can be targets for improvement in the future.

21. VIS has confirmed that childhood visual impairment is very different in nature to that of adults.

22. The use of the term blind to describe the majority of children with visual impairment is inappropriate and often unhelpful.

23. 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.

24. The Scottish Executive should examine the process of collecting registration data to ensure their accuracy, particularly in respect of children with additional disabilities and to ensure equitable access to services and resources.

25. 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.

26. Alternative methods of visual function assessment and certification criteria need to be established that recognise the challenges of assessing young children with visual impairment and additional disabilities, and the need to provide optimal services throughout the country.

27. 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 and should strive to eliminate the current obstacles to sharing of information between these professions.

ISBN 0-954608-0-0