Symbols for our charity: an eye and an ear Forschung Contra Blindheit - Initiative Usher-Syndrom e.V.
Deutsch Content Donate Money Get Free Infos
UsherNet.org > What is Usher-Syndrome > Usher Study by Mary Guest > Planning of Future
Retinitis Pigmentosa

Genetics

Problems

Reaction of Friends

What to do

Planning of Future

Summary

Planning of Future

Education and Career Guidance

If Usher is diagnosed before the young person has left school the teaching staff will need advice on handling the pupil with RP. Informing the school that the child has Usher syndrome is not enough, precise information about the field of vision, the extent of central loss and whether he needs protection from extraneous light will be required.

There are some Low Vision Aids such as magnifiers, binoculars and Closed Circuit Television which could benefit the student's visual performance and he should be referred to the Low Vision Aid Clinic at the nearest hospital for an assessment.

The class teacher will also need advice on the best lighting conditions for the particular student together with use of contrasting tones to make things easier to see.

Career Guidance must be realistic but not too restrictive; labels like 'deafblind' to an employer mean 'unable to hear or see anything'. With Usher's this is rarely the case, particularly in the young adult. What needs to be answered is, 'can the employee, given the restricted hearing and vision he has, do the job?' The employer needs to know that certain aids such as CCTV can be loaned through the Placement Advisory C Teams to help the employee.

Certain jobs involving driving or use of dangerous machinery should be avoided, and again early diagnosis will help prevent these choices.

Skills

As vision deteriorates, help will be needed with mobility and daily living skills such as cooking. Braille can be introduced even if it is only used for labelling and the family helped with finger spelling. However, 'blind' skills should not be suggested until they are really necessary.

For example, Braille should be introduced when the user understands the need for it and still has sufficient vision to enable learning to proceed more quickly.

Psychological Counselling

This service will be an ongoing requirement possibly through the life of the individual as he attempts to adjust to decreasing vision. Centres where Usher syndrome is understood and where they can meet others similarly affected to talk out their difficulties, need to be planned.

For a 'victim' of Usher syndrome, the knowledge that he is not the only one with his condition, that he can meet with his 'own kind', that he is 'understood' and does not have to 'keep up a front', is invaluable as has been evidenced from recent residential meetings held by Sense and the Retinal Awareness Group.

This webpage is designed for disabled people and based on the guidelines of the Web Accessibility Initivative.
Symbols for our charity: an eye and an ear  © Forschung Contra Blindheit - Initiative Usher-Syndrome
A charity registered in Germany, Magistrate Court, Hamburg, Germany, Reg. No. VR 14423