A New Researchproject

The American Association of Mental Retardation discussed the naming Mental Retardation for a long time and decided that this naming is inappropriate, therefore changing the name to Intellectual and Developmental Disabilities - IDD.
The association also recently changed its name to the American Association On Intellectual And Developmental Disabilities (AAIDD) .
In this new definition we can find the new way of thinking about creating the best possible help for a group of very different people.

When a person cannot react in a way we would like him to react (because it fits in our logical thinking), how can we translate or learn to see what this person really experiences?
Evidence-based measures can help us as well as evidence-based interventions given, as long as we base this on desired goals.

Nowadays the medical care is highly improving. Prenatal, natal, postnatal guidance are in better quality than ever. Medical and educational care are constantly improving and financial systems are maintained so that every living person can receive the best care needed.
Consequence is that people get older. And more people having mental retardation will live a longer life. A lot of thinking is done about the aspect if a longer life will lead to better quality of life. With the changing situation also treatments are changing, taking consideration of the dimension of aging in therapy.

Mostly people with mental retardation are classified according to their level of cognitive and adaptive impairment. Nowadays a tendency is seen to divide these people by their needs for environmental supports (AAMR, 1992).

Important will be to know how effective interventions are that are based on knowing these needs. When utilizing characteristic (behavioural) profiles we could develop an instrument to detect needs in people that we think they might improve when given the right therapy available.
With known signals to observe, it should be possible to develop targeted, evidence-based effective interventions.

Research aiming for improvement of aspects of the communication process is most important. Communication is one of the essential contributors in quality of life.
In new research we aim for improvement in hearing and listening, leading to a better possibility for auditory processing and speech perception, and improvement of speech and speech production, leading to better intelligibility and understanding.

Improvements we are searching for are those who lead to a better quality of life by changing conditions needed for optimal communication and taking a look at the possibility for keeping the improvements in communication on a certain level, for example by interventions and repeated assessment and implementing all possible help permanently.
A new researchproject on this subject started a year ago, in the Netherlands.
When you would like to hear more about this researchproject or information related to this researchfield, please leave a message.

Written by M. Coppens

Thinking about basic needs or possibilities

Discoveries in human genetics led to forthcoming diseases and forthcoming syndromes and more knowledge about mental retardation. The advances of the developing knowledge about syndromes and consequences are promoting new ways of looking at a variety of human disorders and permanently changing the field as a result.
The improvements and research results in knowing more about certain syndromes lead to new understanding of and interventions for people who have mental retardation.
Causes, prevalence and basic physical characteristics help us understand the behavioural issues that are considered when developing interventions aiming for improving quality of life.

In life, every person has the basic right for getting the best possible help and guidance available.
This counts for all people in our world. So let's not think from the perspective of what persons with mental retardation are short of….a new perspective will be that all people are a collection of biochemical processes leading to certain (partly predictable) behaviour and experience. Given that there also is an environment that influences the development of each person in a different way, we should think of ways to learn to see what question for help persons with mental retardation could have in stead of thinking in terms of retardation or handicap.

In research in the field of mental retardation, we find several different cultures sharing a common interest. There are Psychology researchers looking at the complex measurements in competence and behaviour, and we find Biomedical researchers looking at causes and genetics. But all researchers in this field are interested in the behaviour of people with mental retardation.

Disorders of mental retardation influence cognition, language and behaviour, and therefore influence reactions of people in the environment of people with mental retardation.
The choices caretakers have to make in the field of educational and psychological (or other) interventions are relative.
Therapies are told to be only effective when improvement is seen according to the view of the people in the direct environment of the person with Mental Retardation. But the main aim will always be the improving of quality of life from the person with mental retardation.
The difficulty is not only to think from this different view, it is most complex to get to know what will be the best reachable quality of life for a person. Especially when you cannot ask these persons themselves.
Improvement can be achieved by changing conditions for communication, so improving all basic needs for being able to communicate. Will this in the experience of the person in question lead to improvement of life-quality, or to an easier way of living? Who can decide if it is the best help?

Written by M. Coppens