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:

• Non complaining population:
  People with special needs and especially when they have a severe intellectual disability can be regarded as "the non complaining population". They don't know the standards. They are often unable to indicate that there is something wrong or different compared to their peers. And as long as there are no external signs on the eyes parents or caretakers won't easily think of visual problems. Particularly when the child has a severe intellectual disability, most energy will be spend in offering conditions for development. And last but not least, there are also often many health problems, so it's understandable that these will get the first attention.
• Misinterpretation of behaviour:
  Parents, family members and caretakers living and working with persons with an intellectual disability are often misinterpreting their behaviour. When the eyes of the disabled child meet ours, we have the tendency to interpret this as eye contact, as seeing. Often this is just a dwelling of the eyes, without any visual input or processing of the information. And what's more, as you know they all make use of compensating mechanisms. All other senses and the available cognitive abilities are used to give as much information as is needed in the particular situation. Non visually disabled people will often think that the child really sees the cookie that is lying beside the cup of tea, instead of thinking that he has learned that the dark spot beside his cup usually is a cookie.
• Attribution to the intellectual disability:
  Many behavioural expressions of persons with special needs are attributed to the learning disability instead of being read as a sign for other things. For instance: an intellectually disabled woman became less mobile, she couldn't find her way anymore and refused to go outside on her own. This behaviour was attributed to the process of early ageing. A common process in the intellectual disabled group. When we assessed her visual functioning it showed that an operable cataract seriously disturbed her vision. After the operation she seemed her old self again. Or the young boy, always stumbling against furniture in the house, was regarded as having a motor or co-ordination dysfunction so often seen in children with an intellectual disability.
• Ophthalmologists:
  Another reason can be found with the ophthalmologists. I don't know exactly the situation in all your countries, but in the Netherlands the ophthalmologist has about 5 minutes for each patient. Can you imagine the way this works with a severely intellectually disabled person? When he has succeeded in entering the examination room and has taken place in the chair, he often is not very co-operative. Most of the time this is due to not at all understanding what is being asked of him. Good assessment of these people asks for plenty of time including ingenious and creative methods of contacting and assessment.
• Circumstances:
  When people have still some visual perception, this perception can vary a lot. The circumstances in which they are can be of big influence: the amount of light, contrast and the distance to the object. Intellectually disabled people with some visual perception won't automatically move towards an object or move the object towards them selves when they can't see what it is. And what even gives more trouble: when this child can see things in an "ideal" situation, he is often expected to behave in the same way in less "ideal" situations where he can't see it.
• Life expectancy:
  Thanks to good medical and social care persons with special needs have longer life expectancies. This also means that they are confronted with the lesser enjoyable aspects of ageing. I mentioned already the developments of cataracts, but also the fact that at a certain age everybody's arms seem to become too short and there is never enough light to read. Spectacles can be of great help, also for people with special needs!

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 Bartim�ushage 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:

• Individual base:
  The assessment is always done on an individual base. It concerns this person with his or her impairment, abilities and compensating
  mechanisms in those particular situations. Advises given for one person for instance on lighting adaptations can have the opposite effect for someone else living in the same house. The advice should be tailor-made.
• In the natural environment:
  assessment of people that are often considered as non- assessable persons should be done under optimal conditions. We not only want to know what the limitations of a person are and how he reacts in an unknown situation. We especially want to know how he functions in everyday life, in situations that are familiar to him. For that reason we do the assessment in the familiar situation and make observations at home, at school, at work or at the day activity centre.
• Diagnosis:
  High quality of service and advice can only be given if you know not only what the demands of the disabled person are, but also if you have expert information by assessment of relevant aspects of his functioning. If you don't know what the nature of the disabilities is and you don't have information about the way that this person gets along with his disabilities in everyday life, you cannot give adequate advice and support. This means that assessment should include information on nature and cause of the disability, on possible treatments, the prognosis, the influence of the environment and of course the impact on daily life and the way the person copes with his disability. It is always a combination of the limitations and the abilities of a person.
• Interdisciplinary:
  the situation of persons with a multiple disability is very complex. For a high quality advice you need to know not only what the cause and diagnosis is, but also what the impact is and has been of this multiple disability on the quality of life. We therefor use first the expertise of the ophthalmologist for the ophthalmologic diagnosis. With these data the orthoptist can start the assessment for information on the visual functioning. After that the psychologist has enough basic data to start his assessment for information on the impact on daily life to complete the information needed.
• Integrated report:
  The next step is the integration of all this information in a report written by the psychologist with support from the ophthalmologist and the orthoptist. Diagnosis and advice are written down in an individual report, which says in understandable language why this person has a visual disability, what he sees, how he looks and which approach and adaptations are needed considering his visual and intellectual abilities.

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:

• Parents:
  The outcome of our starting pilot was presented at conferences and published in educational journals. As a result many parents and caretakers of people with an intellectual disability approached and still approach the Visual Advisory Centre for assessment. It is here worth mentioning that we also get more and more requests for assessment of psycho-geriatric persons, persons with cerebral impairments caused by brain tumours, bleeding or traffic accidents and of persons with psychiatric problems. They make use of our expertise in assessing people that can't be assessed regularly.
• Staff:
  Not only parents were very eager to get assessment for their child. Psychologists and GP's of services for people with an intellectual disability also asked us for assessment. Special attention was asked for the assessment of people with severe behavioural disorders. Was there possibly a relation between a suspected visual disability and the behavioural problem (as often is the case in situations where the environment isn't approaching this person as needed considering his visual disability)?
• Management:
  A third question came from the management of services for people with an intellectual disability. They asked us to screen and assess all the people they have in service. There were two motives for asking us. First they subscribed our view that adequate assessment and advice contributes substantially to the quality of life of their clients. And second: the financing system in the Netherlands offers service providers an extra allowance for each client with sensory problems. With this extra money they are able to offer special support and training.

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
Bartim�us
P.O. Box 87
3940 AB Doorn, the Netherlands
E-mail: M.Raemaekers@bartimeus.nl

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