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Sensory passports

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

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Sensory passports

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  1. 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.

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