Director, Skolen pa Krathusvej og Hasselbo, Special School and Treatment Centre for Autism and DAMP/ADHD, Aarhus County, Denmark
President, The Association of Special Schools and Treatment Centres for Autistic Children, Denmark.
Vice-president, Board of Directors, The Danish National Centre for Information and Knowledge on Autism.
Member of the Standing Committee
for the Danish National Conference On Autism, organised by the
Social Ministry, Denmark.
The real topic of this paper might
in fact be the simplicity of complexity. I am not going to present
a specific ideology on integration. I am not for or against
an ideology of integration - and I hope to be able to demonstrate
why!
Why at all discuss integration?
My reasons for doing so are mainly
two:
1 As far as I can tell, it is still considered the most important question in special education and other types of services to people with handicaps but also a very difficult issue when it comes to practice.
and
2. In Denmark we have some experiences
with integration - and maybe by presenting some of these
experiences you could sort of mirror your own ideas - or compare
the Danish experiences with your own ideas.
CONTENTS
The presentation will consist of:
1. Background.
2. A very short introduction to the history of special education in Denmark and the central ideological concepts.
3. Autism and integration in Denmark today.
4. A study from Arhus on integration of children with autism.
5. The continuum of services.
I come from Denmark - one of the smaller countries in the European Union - known for its welfare system with a high level of social services and services to people with handicaps!
We are 5.1 million people. We have
three levels of public administration: local authorities, county
/ regional level up to 600.000 inhabitants, and state/government.
Services for handicapped people are mainly on the regional level
(the counties).
In the biggest county - Arhus County - with 26 local authorities and over 600.000 inhabitants I am director for a special school and treatment centre for children and adolescents with AUTISM and DAMP (ADHD).
Personally I am involved in several organisations and projects for people with autism. Let me mention these few:
1 . Centre for AUTISM and DAMP, Aarhus County, Denmark.
We have about 1 00 students in the programme.
The staff consists of about 126 teachers, educationalists / social pedagogues, psychologists, consultants etc.,
2. The Danish Association of Special Schools and Treatment Centres for Autistic Children (ASSTCAC) works in co-operation with the Danish National Autistic Society (Landsforeningen Autisme). The association organises conferences and courses on autism, publishes books in co-operation with educational and psychological publication companies (Lorna Wing, Uta Frith etc.) and support study tours for professionals. Our conferences and courses are attended by about 1500 people every year. Considering that we are only 5 mio. people living in Denmark, we feel this is quite impressive! And it indicates the interest in the field.
3. The Danish National Centre for information and Knowledge on Autism is run by the Association of Counties in Denmark, The counties are - as you have heard - responsible for education and social services to people with handicaps. The centre provides counties, local authorities and professionals with information on autism. The purpose is to enhance policy making in local government for people with autism. the centre is placed in Copenhagen.
4. The Danish National Conference
on Autism takes place every year and is organised by the Social
Ministry. The conference is planned by a standing committee of
professionals and the president of the Danish National Autistic
Society.
HISTORY AND CENTRAL IDEOLOGICAL
CONCEPTS
Although the ideas came earlier,
mainstreaming children. with special needs gained speed about
20-25 years ago and was the result of a showdown between the ruling
idea that people with handicaps should be put away in care of
the state and new ideas about everybody's right to education and
participation in the society.
Presently in Denmark we are in a
period labelled "a school for all". The basic idea
in the new law on public education - when it comes to handicapped
children - is special support for a student-adopted ordinary
education. The key word is educational differentiation.
In this context it is interesting
to notice a new tendency, that parents do not primarily ask for
the closest classroom, but more and more ask what the qualities
of the education and other services are!
The Danish parliament stated very early that the principles behind all intervention, placement, education etc. of handicapped people should be:
1.
proximity, 2. as little intervention as possible, 3. integration
and 4. efficiency. Later was added motivation
/ the right to choose.
In 1980 the old special laws on the
care of handicapped people were abandoned. Special needs have
since then been written into the laws where ever they are needed.
A person with a diagnosis of a handicap legally has all
the civil rights of a citizen.
In the law of education and the law
of social assistance there are special sections about special
needs, but there is no law on specific handicaps and specific
care. Decisions on establishing special education etc. are based
on individual needs and not on a diagnosis.
The key concepts behind this development
was normalization, decentralization and integration. In the later
years - in my opinion - this again has lead to a growing tendency
of, or in some cases even a demand for specialization. I
will return to this point later.
I am aware that this tendency is
in direct contrast to what is happening in many other countries.
And one could ask why we see this tendency so little in accordance
with the UNESCO Salamanca Statement and other points of view that
directly recommend inclusion.
THE DISCUSSION TODAY
I will try to describe central issues
in today's debate on integration in Denmark with emphasis on some
critical points of view on the concepts and principles mentioned
before.
Today normalization is not all together regarded as only a positive factor.
Nobody seems to disagree very much about the goals. Everybody (included people with handicaps) have a right to take part in normal life in the society - as far as it is possible for the individual.
But does this automatically signify
that it is meaningful to every handicapped person to be mainstreamed
- and if not, what then ?
Had we asked as much normalization from our immigrants as we have been demanding from people with handicaps over the later years, we certainly would have had problems with human rights.
Normalization might have an intolerant
side as well. What about the right to be different ?
Let us look at the principle of decentralization. - Before 1980 the responsibility for the care of handicapped people was the state's responsibility. After 1980 the counties and - in some cases - local authorities were responsible.
Today a favourite bureaucratic and political idea is to let the local authorities run everything. So in Denmark like in other European countries there is a tendency to continue the process of decentralization also for services for handicapped people to the very local level.
The argument so far is that decentralization in general has lead to better facilities and services as well as a financially better situation, when it comes to services for people with handicaps.
In my opinion this is not so obvious. The better services might as well be due to the general development in the society of understanding the rights of handicapped people.
To say that decentralization has
led to better services for handicapped people is really the same
as stating that the growing number of new-born children is due
to a growing number of gooseberry bushes or a growing number of
storks.
I, myself, believe that the state
level is too far away for the citizens, but on the other hand
local authorities are sometimes too close, too small and in many
cases inadequate to meet the needs of people with a severe handicap.
They do not have the necessary experience - and are not always
able (willing ? understanding enough ?) to back up special needs
financially.
In Denmark we have opened a national center for the civil rights of people with handicaps. The center is financed and run by the state with en executive committee with a majority of representatives from the different societies of/for handicapped people.
The centre will control the other levels of (local) government in the quantities and qualities of services to people with handicaps. Why is this centre necessary if decentralization is such a good idea ?
My conclusion so far in this discussion is that the counties in size is the right level. But the counties surely need to work within a legal framework that ensures a certain level of quality. And why ?
Looking at the differences in services
we have to conclude that they are not due to different needs.
Certainly the process of decentralization so far has resulted
in a very different development in our different counties
and it is difficult to explain this by other factors than personal,
financial, political and/or ideological ones. So the process
of decentralization results in a need for control !
Integration
(fig. 5) was a very important issue and provided the impact for
gaining civil rights for handicapped people. The law, all political
parties and important organisations in my country agree that people
with handicaps have all the civil rights. So what are the problems
? This situation is what many people with handicaps, parents
and professionals in Europe and elsewhere would consider ideal.
Let us look a bit closer at the circumstances of an example, where people with handicaps are being served in and by the so-called "normal system". I will take an example from the educational field:
An analysis of the statements of
the aims in the Danish law on public education in primary school
shows that the statements about the general purpose of public
schooling are based on the assumption that every child has certain
qualities like a want to learn new things, imagination, an ability
for independence and taking a stand, creativity etc.
Comparing these human qualities (mentioned in the law) with the handicap autism results in the conclusion that most people with autism do not have the prerequisites for all those qualifications.
This raises some very uncomfortable
questions. Nobody suggests that children with autism should not
be covered by the Danish law on public education. But it is indeed
a strange situation to be served under a law that at the same
time in itself is handicapping you.
The difficulties for people with
autism in understanding the meaning of communication and social
reciprocity certainly raise some questions on how far you should
push a person with autism into very complex social situations
like kindergartens, classrooms and playgroups. It is hard to imagine
that anyone can learn from something meaningless.
Let us look at the principles of
intervention, placement and education. Again I will stress critical
points of views to try to describe the complexity of the problems.
The principle of proximity is often seen in the way, that the child should attend school as close to home as possible.
But to any child there could be many
reasons to choose another school and proximity does not always
mean your local neighbourhood. So why should a child with a handicap
be restricted to the nearest school ? If you want to give all
children equal possibilities you have to treat them differently.
As little intervention as possible
means that the child should
not be offered more support or special education than absolutely
necessary. There sure is some truth in this, but it does not
mean that it is a good idea to leave people with their problems
as long as possible.
To many people the principle of integration means that instruction of the handicapped child should take place in an ordinary and normal school environment if at all possible. In this way you only see integration as one of the means in education.
Although being an important goal, integration, mainstreaming and inclusion are not always the means of gaining social competence. Certainly to many children with autism this is not the case - as mentioned earlier. (Nobody would leave a blind person to drive a car on the highway to learn driving).
To me this principle of integration does not always mean that the local school and the normal classroom is the best solution.
Being segregated into a special educational
environment is certainly very meaningful to many children with
autism. But being segregated in my point of view -
does not mean a loss of human rights .
Efficiency does
not mean that any public local bureaucrat is right, but means
that decisions should be taken and choices should be made based
on professional knowledge and counselling, scientific research
and the individual needs. Measures must be taken. to ensure that
the child derives maximum benefit from the subjects taught at
school and thereby develops its own ability and talents to as
large an extent as possible.
So looking at these concepts and principles we have to conclude that they do not hold the same meaning to everybody. The situation in Denmark right now is that a growing number of parents, when choosing school, do not ask for the nearest school but want to know about the qualities of the education and certainly want to exercise their right to choose a school (and a special school) that knows about their child and can provide the right education and other services.
So there is a growing tendency and in some cases a demand for specialization - and this demand from parents etc. is now widely supported by the ministries and the government.
At the same time different societies for handicapped people have developed different points of view on integration/mainstreaming.
The different points of view concern
mostly using integration or nonsegregation as means versus seeing
it as a goal.
The newer principle of motivation
must be seen in this context. It is essential that the special
education established - and not least the degree of integration
employed - is in accordance with what the teachers
involved and the parents think is the most suitable for this given
child.
It is interesting to see that the
growing influence of the parents results in a growing demand for
specialization. In reality there is a change in the development.
The old discussion about the principles and concepts behind integration
is being replaced by a discussion about rights and
qualities.
THE INTEGRATION STUDY FROM ARHUS
Let us turn to the study from Arhus
on school integration of high functioning autistic children.
The study was done by two psychologists:
Anegen Trillingsgaard from The Institute of Psychology at Aarhus
University and Ester Ulsted Sorensen from the Child Psychiatric
Hospital in Risskov, Arhus. It was published in the journal "European
Child and Adolescent Psychiatry", vol., issue 3, July 1 994.
The purpose of the study is to describe the factors that are critical to successful school integration of high-functioning children with autism. The report presents a qualitative description of the experience of parents and teachers with individual integration of high-functioning children with autism.
Eight sets of parents, key teachers and several of the children were interviewed using a semi-structured questionnaire.
The foundation of the qualitative
analysis is the perceptions of the interviewees as read from transcripts
of the tape recordings.
The results have been organized around some central issues:
- Background for the parents' choice of normal school.
- Academic and social progress in school.
- Resources and methods used in connection with integration.
- Evaluation of the integration.
- The costs of integration.
I will not go into details about
these issues but turn right to the discussion and the conclusions
of the study. It raises a lot of good questions and show some
very important factors for successful integration of autistic
children.
As the study sample is small, generalizations
from the results can of course only be made with corresponding
reservations. It can be gathered from the interviews that integration
was considered the right choice, except for the case of one child,
who was later moved. Despite of the positive results there are
several questions that must be discussed.
For example:
The experience of a child for whom the integration was discontinued shows that integration can be too much of a strain for both the child and the family.
Integration has, in many cases, involved
a good deal of extra work and extra burdens for the teachers.
It is surprising that the teachers, having been under pressure,
did not insist on receiving supervision from experts in autism.
It is possible that the teachers could not get the necessary supervision
through the regular channels, and that they lacked the information
about where support could be obtained. Perhaps the teachers have
also burdened themselves with too much responsibility in managing
the problems. They have had to use the parents as experts with
the subsequent additional pressure on the parents.
With regard to the children, it appears that the majority of them have been alone and without support in difficult social situations like during school recess. It appears that most of the children have some difficulties in practical matters. The teachers have been aware of these problems and have done what they could to be supportive. The question is: has it really been enough?. The authors are convinced that to give these children optimal conditions for managing the social side of integration, there are times where it is necessary to provide the child with personal support that is above and beyond what the class teachers can reasonably manage.
The authors strongly indicate the
importance of making a plan for guidance and supervision for both
the school and the family, right from the beginning of the integration
process. They recommend that with every integration project with
an autistic child there ought to be special pedagogical-educational,
psychological and child psychiatric professionals with experience
in autism available for consultation.
Let me summarize the findings of the study. The authors conclude that the following conditions are important factors in making integration into normal classroom and normal school beneficial to autistic children:
CONTINUUM OF SERVICES - NEEDS FOR THE FUTURE
Last a few words about the quality and quantity of services - and what the general opinion is in Denmark.
The civil rights of people with handicaps is in general secured. I don't know of any political party or other organizations in my country who would be against that. So the need for strong, ideologically radical ideas on integration isn't really there.
The discussion is more centered on how to make the quality of services better (better guidance, better classrooms, better workshops, better living facilities etc.) and give people a possibility to choose what they believe is right.
Integration/mainstreaming/inclusion is not in general for autistic children the means of gaining social competence. It does not automatically leads to normalization in the social communicative development. Sometimes it even makes things worse.
To some higher-functioning children especially of the "Asperger-type" it is meaningful to attend a normal classroom. They certainly can profit from the education per se, although there does not seem to be a difference in the quality of social-communicative development. Research in Aarhus, Denmark points out this. But the research also shows a need for professional counselling to make the integration a success.
Autism is still a relatively "new" handicap, so we have to deal with many hypotheses, issues and policies.
In Denmark we have over 20 years of experience with integration of handicapped children in normal school..
What have we learned from these experiences? - A new way of thinking !
We view facilities and services for all handicapped people as a continuum.
Among other things this means that inclusion is not the answer to meet the civil rights and educational, social and vocational needs of all handicapped people.
The main issue here is to define and adapt an appropriate, individual programme for each person with autism. There should be the possibility to choose the right service with the right qualities.
Many, maybe most children with a
diagnosis of Autism, need a segregated, specialized environment
to profit from education. They do not profit from being taught
in a normal classroom.
With this as a solid basis we are - of course - in favour of providing possibilities according to the needs of each individual child.
In the new law on public education
a continuum of special support is emphasised.
So what we need is a continuum
of services covering the needs of autistic people and based
on centres that can provide diagnosis, assessment, education,
social services etc. on an individual basis. These centres should
also be able to provide supervision, counselling etc. to authorities,
single persons, families etc.
Moreover with the growing number of programmes for autistic children, there is a need for developing more services and special programmes for adults.