Visual impairment in intellectually disabled children and (young) adults: Train the trainers - a pilot study in South Africa
Focus: School Years
In the last decade it has become clear by activities of the Visual Advisory Centre of Bartiméushage, and later on confirmed by the outcome of the scientific research in the Netherlands on the prevalence of visual problems amongst persons with an intellectual disability, that almost 25 % of them are also visually disabled according to the standards of the World Health Organisation. This is a very serious message. What makes it worse is our experience that in most cases the visual disability hasn’t been recognised.
How can this be explained?
All these factors explain why most people aren’t aware of the presence of visual problems in persons with intellectual disabilities and the influence of this extra disability on daily life. Being aware is the basis for understanding and a possible treatment. It is certainly necessary for making adaptations in the environment and for developing an adequate way of making contact. A pro-active approach of the multiple disability increases the quality of life of the disabled person.
During the last decade a lot of persons with an intellectual disability in the Netherlands have been assessed on the prevalence of a serious visual problem. At the moment the visual problem was defined, we explained the impacts of this disability on every day life and offered advice on how to handle. We published and presented our way of examination and the results on conferences like this and especially on conferences on intellectual disability. A colleague organisation in South Africa, Pioneerschool in the Westkaap, then asked us to disseminate this specific expertise on the assessment of and the advises on multi-disabled persons in South Africa.
At the end of the last century we had our first orientating contacts. Our most important aim was to create a basis for a joint venture between schools and centres for multi-disabled children and adults in the Netherlands and South Africa (Bartiméushage and South African Schools for the Blind), educational institutes (Free University Amsterdam and universities in South Africa) and as a connecting link between them all the South African National Council for the Blind (SANCB). Why this construction?
Back to the first orientating contacts.
Professionals from Bartiméushage and the Free University Amsterdam started on request of the board of Pioneerschool with a course for staff and educators from the Schools for the Blind in de Westkaap province. It was a short introduction to the essential elements of our way to detect visual problems in children and youngsters with intellectual disabilities. Information was given on important syndromes, behavioural signals that could be an indication for visual problems, the effects of specific visual disorders on everyday life and of compensating mechanisms. Several intellectually disabled children suspicious of visual problems were examined observed by ophthalmologic nurses. In this way we could demonstrate our methods. At the same time we got information about the existing level of expertise of the staff of these schools and feedback on the necessary adaptations for the South African situation.
We then had a meeting with the responsible officials of the Department of Education and Health to see if our way of working could be adapted to and, if possible, be implemented in the South African situation. The accent of this meeting was the policy on care and services for people with visual or multiple disabilities developed by the Department. The Dutch model of outreaching activities was presented in which we stressed the importance of the combination of having expertise centres from where multidisciplinary teams can spread out over the country to examine people and give advise and information on prevention, possible treatment and adaptations in approach and environment.
After that we went to the University of Potchefstroom on invitation of professor Hans van der Merwe. He had organised a week on the theme “developments in care, services and support of people with intellectual or multiple disabilities. The courses were given by professionals from Bartiméushage and from the Free University Amsterdam. Most of the audience were students or former students but there were also parents and directors of schools and centres for intellectually disabled people. The programme was based on the same elements as the Westkaap programme, but with more accent on the theoretical and scientific foundation.
Our last contact in South Africa was a meeting with Dr. Henoch Schoeman from the SANCB. We discussed with him his ideas about such a joint venture, the possibilities of realisation and the necessary funding. All participants in this co-operation would consult their own organisation to get sufficient support, including the funding, for this project. From the fact that I am here telling you about this initiative you may conclude that we succeeded in starting it.
The project itself.
What is the purpose of the “train the trainers” project?
The purpose of this project is to establish greater awareness and understanding amongst educators, trainers and other professionals regarding the nature and needs of visually impaired people with intellectual disabilities or intellectually disabled people with visual impairments. The first, visually impaired people with intellectual disabilities, is important because of the fact that more and more children with a visual disability asking for support from the organisations for people with visual impairments are also intellectually disabled. The latter, intellectually disabled people with visual impairments because of the many intellectually disabled ones with non-detected severe visual impairments.
What is the strategy of the project: “Train the trainers”?
The focus of the programme is on educators and other professionals active in the field of visually disabled people with intellectual disabilities or in the field of people with intellectual disabilities. The ideal is that after the completion of the whole training programme they will be equipped to train other educators and professionals and also to support the parents, familymembers and caregivers of the people concerned.
The material will be presented in a modular and outcome based format. Participants will be able to build up credits from the available modules. There will be a number of core modules, which all participants have to take, and elective modules from which they can choose, according to their interest and area of functioning. Some of the modules will be presented during periods of contact training in South Africa, and some through distant learning and training. A module will only be deemed completed if the outcomes are achieved and the trained trainer is able, as a final outcome, to successfully convey the acquired knowledge to other educators and professionals.
The first group of trainers will be a multidisciplinary group consisting of educators and psychologists from identified schools for the blind as well as schools for the severely intellectually disabled learners. The different professional background of the trainees, some experts on the blind – some in the field of intellectually disabled people, makes that both groups can benefit from the expertise of each other. It promotes the interaction between the trainers as experts on the multi-disabled and the trainees coming from the singular field and enhances the integration of the knowledge.
Ophthalmic nurses working in hospitals and clinics in the areas of the identified schools will partly get a parallel programme on performing visual screening. For the pilot we’ll also welcome relevant officials from the Departments of Education and Health in which districts the identified schools stand.
The basic training will start with modules for all trainees and will then be divided into two parallel sessions, one for educators and other professionals, the other one for ophthalmologic nurses and optometrists.
The training group of educators will be trained in becoming aware or more aware of the signals indicating a possible visual disorder in people with an intellectual disability. For instance:
The training group also needs to know the effects of this particular visual disability in the daily life of this particular person. What does it mean when this boy has a tunnelvision? Can he still go into the traffic? Why is this girl with Retinitis Pigmentosa always stumbling in the evening? Does this child need big characters or small ones? Does he need strong light? What distance does she need between offered objects? How do I have to offer things to her so she uses her visual abilities best?
The third element of the training is the development of the expertise on communication with, adaptations for and the detection of the compensating mechanisms of this particular person. What is the best way of making contact with this boy? How do I announce myself to someone who can’t see me? What colours shall I use for instance for clothing or make up? What helps him use his visual abilities as optimal as possible? How can I join her own way of dealing with obstacles? Especially observing children learns us a lot about the way each of them has developed his or her own way of solving problems.
The training group of ophthalmic nurses will also be trained in becoming aware or more aware of the signals indicating a possible visual disability in persons with an intellectual disability. Furthermore they will practice the use of elementary tests for screening the visual functioning of the person. The purpose of this training will be to get expertise in adequately selecting the persons with a serious suspicion of a visual disability needed to be seen by the ophthalmologist. The definite diagnosis has of course to be made by the ophthalmologist. But what we try to accomplish is a thorough pre selection: only persons with a serious suspicion of a visual disability or a possible need of glasses should be send for further examination. So no precious specialists time has to be spent on persons with normal or sub normal visual functioning. Even more important should be that no person with a visual disability will be deprived of necessary treatment and support. The idea of this part of the training is based on the results of the course for specialised GP’s for people with an intellectual disability. Professionals from Bartiméushage trained them in using simple tests to discriminate between persons with normal or subnormal visual functioning and those suspected of visual problems.
In both groups much time will be spent on dissemination of the acquired knowledge.
The programme will be regarded as a pilot project, which will allow the involvement of small numbers of trainees and the making of changes to the programme as the need arises. This project will run in one or two provinces of South Africa, depending on the total number of trainees and the possibilities to implement the acquired knowledge. It will be obvious that much of the success of this pilot will depend on the co-operation of the identified schools for the blind and the implementation of this knowledge into educational programmes.
A task group will be formed consisting of people from South Africa and the Netherlands. This group will monitor the training and evaluate the trainee’s ability to convey the acquired knowledge to other educators and professionals. They also will, if necessary, adapt the developed standards for admission to the training, based on foreknowledge and experience of the trainees.
With the assistance of the relevant departmental officials and trained trainers a strategy will be developed to reach other Education and Health districts in each of the two Provinces covered by the pilot. To make the training an ongoing activity it is necessary to be assured from the support of policymakers and officials. The SANCB will be the interacting link.
After the successfully accomplished training the new trainers will start disseminating their knowledge to other professionals and start supporting parents, family members and caregivers. Over a period of two years they will be monitored. During that period the original trainers from Bartiméushage and the VU will operate as an electronic helpdesk by giving as much professional support as needed.
During the evaluation phase a workshop will be arranged for the participants of the first training to evaluate progress and determine the level of success. From the “lessons learned” a Policy Document will be developed which could eventually be used by other provincial Departments of Education and Health. If necessary, the training programme will be adapted or revised, and registered with one of the South African Universities for the further development and training of educators and other professionals in the whole of South Africa and in the SADC region. Bartiméushage and the Free University Amsterdam will also offer the possibility for psychology students or ophthalmologic nurses to follow a more intensive programme in the Netherlands.
The overall aim of this project will be the concept for a programme of exchanging knowledge from Bartiméushage/ the Free University Amsterdam that can and (hopefully will) be used in other countries all over the world to increase the quality of life of persons with a (visual and) intellectual disability.
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