1. What they are and how they help
Sensory passports
What they are and
how they help

2. What is a sensory passport?
A short accessible document
Created with the child (ideally)
Presented in the child’s chosen format
Provides key information for the adults involved – e.g. parents, teachers, therapists,

3. Sensory passports explain
what sight or hearing a child has.
ways to help the child use their sight and/or hearing more effectively
other “important information”

4. What a passport might include
Child’s eye condition
Acuity, glasses and best print size
Visual fields
Lighting
Adjustments – e.g. human, environmental
Variations in vision – e.g. night-blindness, after seizure

5. BIOS & RCO view
Effective partnership depends on clear communication between parents, children and professionals. Health professionals should ensure that information about a child’s ophthalmic disorder is presented in an understandable way and is supplemented by written information, including copies of clinic letters, where appropriate.

6. BIOS and RCO view
All families should receive an explanation of their child’s disability in language that they can understand from an identified specialist doctor, usually the responsible ophthalmologist.

7. RNIB survey
Lack of information is a common complaint; more than 60% of parents in the Royal National Institute of the Blind survey said that they had nobody knowledgeable to talk to when they first learned of their child’s disability, and 40% claimed never to have had an explanation in terms they could understand.

8. Accessible information
Parents need easy written information to share.
Lots of people can’t understand hospital letters to the GP (including some GPs!)
A passport can include information on “the meaning” of a visual impairment for the child

9. Issues for sensory passports
What information is included?
Confidentiality? Who is the child willing to share it with?
Who is responsible for working with the child to produce it?
How often it is updated?

10. Case study Young woman about to meet dietician
Low vision passport shared with dietician
(see sample)

11. Katie – case study
Young wheelchair user, prone to falling asleep at all times
Considered too disabled to learn Makaton sign language – but learned it from other children
Observations noted importance of positioning due to visual field loss
Result – lively youngster, seldom asleep

12. Daniel – case study
Young deaf adult about to be sent to costly placement miles from family
Challenging behaviour proved dangerous
Medical records showed he had RP
Information about vision recorded and staff taught to approach within his visual field
Behaviour became manageable – local placement has been a great success

13. Christopher – case study
Teenager with Down’s syndrome, heart problems and registered blind
Big variations in vision when tired
Conflict between school and respite care home about his level of functioning
Recorded information about reasons for variations in vision helped people support him

14. Why recording information is important
Realistic expectations – including extended family
Creating opportunities for learning and development
Personal safety
Avoids family having to repeat information frequently

15. Who needs to know about vision and hearing?
Child (if possible)
Parents and wider family
Teachers and school staff
Therapists
Other staff – e.g. rehabilitation officers for the visually impaired
Support services – e.g. short break service

16. Next stages - Hospital Hospital letters to be in Easy English –
Hospital staff need templates for key conditions/words.
Need for consent form for parents to sign to initiate passport

17. Next stages - teachers
Co-ordination of information from clinic, school and parents
Co-ordination of information for key adults - e.g. print size, position in class
Need for protocols and priorities to be finalised.

18. Everyone needs a passport!
The Tower Hamlets Low Vision Committee service users think everyone should have a passport – not just children.