The outreaching function of a specialised centre for persons with multiple disabilities.
or
Meeting the complex needs of persons with multiple disabilities in their own familiar situation.
Marlies Raemaekers, the Netherlands

Plenary Session 2 - Multi-disabled visually impaired, Monday 10 July 2000, 11.00 - 12.30


Good morning Mr. Chairman, ladies and gentlemen,

Last week I visited my new GP. After a short conversation and reading the records of me and my family he started to ask some questions about my daughter, the family background, certain things in her behaviour, did she have small accidents lately?
Upon my asking why all these questions, he said he would like to see my daughter because he suspected her of having a serious health problem. Looking at all the information he got, there was a chance of 30% that she would have this health problem. I was taken aback and it took some time before I got to myself again. Then the questions came one after another: what was the diagnosis, how serious was it, did she need further physical examination, could the results of this examination tell us if she belonged to this 30%, what was the prognosis, what kind of problems would she encounter and most of all: could something be done, was there treatment possible?

I just gave an impression of what to my opinion is a very natural reaction for a parent confronted with this kind of message. If your child has a chance of one in three having or developing serious health problems you want to know what is the problem, how to handle it and what can be done.

In the last 10 years we have examined many people with an intellectual disability in the Netherlands on visual problems. A serious indication made some years ago by ophthalmologists and GP's working in services for people with an intellectual disability showed a prevalence percentage of 10. 10 % of all the people with special needs could be suspected of having a visual impairment according to the standards set by the World Health Organisation. After examination of more than 3000 persons with an intellectual disability we know now that over 30% has serious visual problems.

The data on the prevalence of hearing problems give the same indication: a similar percentage of 30% is known. For a long time it has been very difficult to validly assess the hearing of persons with learning problems. An audiometric device has recently been developed and tested for use with non-co-operative persons. We can therefor now offer a combined sensory assessment and advisory report. This is especially important for people having both a visual and hearing impairment apart from their intellectual disability.

Why are there so many persons with an intellectual disability having undetected visual problems? We as experts from experience or professionals know what the signals of a visual impairment can be. We also know how important it is to get in contact, to offer the best treatment, to get a relationship, to communicate with them taking the consequences of the visual impairment into account. But most parents of a child with special needs or most people working in services for persons with an intellectual disability are not familiar with this knowledge. Several reasons can be mentioned:

It will be obvious that our expertise on the education, care and support of visually or multi-disabled people can be of great value to persons with an intellectual disability.

So improving the quality of life of people with suspected visual problems apart from their intellectual disability should start with expert assessment of their visual functioning. The results of this assessment will form the base for necessary advice, adaptations of the environment, training and support.
The developed expertise on assessment of the visual functioning of persons with an intellectual disability was first put into practice on a larger scale by the Visual Advisory Centre of Bartiméushage in a pilot in co-operation with an organisation for intellectually disabled people. We screened all their residents, did assess the visual and psychological functioning of those suspected of visual problems and gave advice written down in a report. This pilot gave the first serious indication of a prevalence of visual problems in the group of persons with a special needs according to the WHO standards of 30%. For that reason we offered organisations for people with special needs to screen all their residents on the visual functioning and assess those who were seriously suspected of having a visual disability.

The Visual Advisory Centre:

The working method of the Visual Advisory Centre is based on the following basic elements:

The objective of this approach is to improve the quality of existence of people with a multiple disability. Not by changing their behaviour but by influencing their environment. This change of the environment leads to a better understanding of the world around them or at least to a more enjoyable living situation. In this way many more persons with special needs can profit from the developed expertise on a tailor made base.

In practice

A team, consisting of an orthoptist, a psychologist and an experienced caretaker, visits the person that is suspected of having serious visual problems. They have studied preliminary the file of this person. Arriving at his place, they contact him and set him at ease. Included in this phase of the assessment is an interview with parents and staff.
In the assessment we can distinguish four stages:

  1. Screening:
    we originally started with a screening of people that could be suspected of having severe visual problems. This screening is momentarily done by GP's in services for people with special needs. We offer them a training that has a theoretical part and an on-the-job training. In the theoretical part they learn about visual problems and high-risk groups. The on-the-job training teaches them for instance the use of special assessment methods. This training is part of the new post-academic education for medical specialist in the field of people with an intellectual disability.
    The advantage of this approach is that the GP can detect more easily clients that are suspected of visual problems and can give priority for further assessment to the most urgent ones. The advantage for us is that we can spend all our time to assessment of the people really belonging to the high-risk group and don't have to spend it on false-negative or false-positive people.
  2. Ophthalmologic diagnosis:
    Of people that are really suspected of having serious visual problems we'll ask to offer us as much information as possible on the ophthalmologic diagnosis. Has he ever been seen by an ophthalmologist? What is the cause of the visual disability? What is the prognosis? Which medical treatment is possible?
  3. Visual functioning:
    The information of the ophthalmologist (if present) is the starting point for the assessment of the most important visual functions. What does he see and what not? What is the best and what the worst influence of the environmental conditions on his visual functioning? Does he react and if so, how does he react to visual stimuli?
  4. Psychological assessment:
    The assessment is completed with the information from psychological assessment and from observation on the spot and on video. What are the cognitive abilities of this person considering his visual disability? What are his visual abilities, which compensating mechanisms does he use or can be taught? What is the analysis of his complex disability?

All the assessment data are assembled by the psychologist and integrated into a report written in understandable language. In this report attention is paid not only to the diagnostic information but also especially to the impact that the visual disability has for this particular person. The impairment is explained in terms of what it means in everyday life. The existing compensating mechanisms are put into spotlight. Compensating mechanisms that can be taught are described. Examples are given of possible adaptations in the environment like the use of contrast at the lunch table or in the paint in the house. And above all advice is given on the best way to contact and communicate with this person.
The report is discussed with the disabled person himself if possible, with the parents and with the staff. After this discussion appointments are made about the implementation of the given advice.

On organisational level we saw three different types of requests:

At this moment we are far from adequately dealing with all the questions and expectations of parents and organisations. We have five interdisciplinary teams active, but even then there is a waiting list of several years.
The necessary expertise for adequately assessing and advising people who are very difficult (or often impossible) to assess regularly comes from professionals working or trained at the specialised centre for persons with multiple disabilities.
We think it a necessity to have this background from a quality point of view. The expertise of people working in our Visual Advisory Centre needs to be constantly fed with the experiences of their colleagues working at the centre and of course in reverse.

The centre for people with a multiple disability can function as an expertise centre, a kind of laboratory, which is always at least one step ahead. In this way the centre serves both as a care provider for those who can only live adequately in a environment that is fully equipped for them, and will serve as a breeding ground for continuous development of necessary expertise. This mutual influence from the specialised centre to the individual and reverse results in a constant incentive to improve our advises and services. The benefit is for our clients.

Thank you for your attention

Address:
Drs. Marlies Raemaekers
Bartiméus
P.O. Box 87
3940 AB Doorn, the Netherlands
E-mail: M.Raemaekers@bartimeus.nl


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