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Two papers presented to the session on "special needs education" during the 2000 World Education Forum, held in Dakar, Senegal.
Co-operation Between Families and Schools - Parent Power
By Fadia Farah, Lebanese Down syndrome Association
1. The difference
1.1 Society's View
My name is Fadia Farah. I am the mother of three children. Mia, the youngest has trisomy 21. Her birth revealed to me, to my husband, and to our children, an aspect of society we knew nothing about. My daughter did not exist for this society. During the first two days, I was not able to see her under the pretext that she was undergoing tests. Mia was not in the nursery with the other children. She was kept apart, already under quarantine. In fact, everyone saw my daughter's disability only, rather than the baby she was.
1.2 Citizen's View
The information we received about trisomy 21 was mostly negative. We were told that "these people" couldn't talk correctly, that they are violent, that they have severe mental retardation, and that they can never follow a regular school program. They advised me to place Mia in an institution where qualified professionals will take care of her development. They insinuated that since we, her parents cannot do anything for her and since her presence might disturb her brothers, we should take her away and place her in an institution as soon as possible before we get too attached to her. No one ever talked about my daughter, about her potential. I was faced with people who were telling me what to do and imposing their opinions, without informing me about Mia. They projected their fear and ignorance on me and made me responsible for their inadequacy. My family and I, due to Mia's presence, reflected their limitations. These conclusions only came into focus after years of struggle and search.
1.3 Result
The day after Mia was born, we reacted like we were pressured to react. It took us some time before we could see her the way she really is because we were torn between fear and guilt. Fear of the mistake we made that contributed to our daughter's trisomy. Guilt for having a child who is "different" that we could not take care of. This made us feel ashamed.
2. Parent organization
But Mia stayed with us. During our period of doubt and pain we were lucky to meet other parents who helped us change our views about Mia. These parents gave us scientific facts about trisomy 21. They helped us in our search. They gave us the support we were missing. Together we discovered our power. By joining efforts, we could better define our needs and formulate an adequate course of action to insure a better future to our children.
We, the parents are the stable factor in the lives of our children. United, we are a significant force that holds the right to decide and to change the system. We have therefore established an association to fight for the rights of our children. Our first concern was seeking information to combat fear, ignorance, and the myths that accompany our children's birth. Our documentation was based on national and international research results. We wanted to find out the capabilities of our children, the "what" and "how" of the future we could expect for them. We arrived at the following conclusions:
Our action was initiated pursuant to these conclusions. We believe that educating our children is not a privilege but a right to be recognized by everyone.
Based on the results of our research, we formulated a detailed plan for including children with special needs in regular classrooms that we presented to several schools.
Our Plan
This is the procedure we
followed and the results obtained in the pilot school:
For inclusion to work, it is very important to prepare the administration, the teaching staff, as well as other school staff, through meetings and workshops.
The administration took the initiative to present inclusion as an integral part of school policy.
Assessment of children's abilities and potential is crucial for planning a course of action to overcome limitations.
Establishing a multidisciplinary team to help the teacher adapt methods and materials to meet the needs of students and support the development of inclusionary practices.
A child who has been enrolled in an early intervention program and has been in contact with other children from a young age, could easily be included.
In order to help each student achieve his fullest potential, it is necessary to establish a multidisciplinary team consisting of at least:
Classroom observation by members of the multidisciplinary team has often helped to prevent or quickly remedy the difficulties experienced by several students that arise in implementing a full inclusion program.
Thus, we find it very important to create a school atmosphere in which every student feels welcome in order to enable him to favor active participation in the variety of activities proposed. In addition, by teaching all students to accept differences, every single child will be concerned by the work of others.
Close cooperation between all school staff enriches this experience and allows the child to meet the challenge, increase its self-confidence, increase the probability of its participation in class life, especially its group membership, and its ability to take decisions regarding this group.
First such a Program in Lebanon
4. Problems encountered
Full inclusion of children
with special needs was a first attempt in Lebanon for the school and for
us (LDSA). We tried to adapt what was done in foreign countries to our
society. This did not go without problems. Many of these problems were
solved during the year, but the most important remain:
It should be noted that two of the essential procedures for implementing inclusion that is assessment/IEP and adapting of program and method have already been established and continue to be revised to meet the needs of students.
The role of the teacher has changed. The primary goal of teachers is to educate all children. In order for them to achieve this goal they must vary their teaching methods. Their role is no longer to transfer knowledge but to enable children to exploit all their abilities, to make decisions, and to have the means to implement those decisions.
Thus, the philosophy of teaching has changed. Early intervention is assigned a very important role in facilitating inclusion of children with special needs in a classroom where students and teachers work together towards a common goal. Together they will find ways of encouraging each other to overcome limitations. Everyone should be allowed to participate using different resources.
The availability of a multidisciplinary team has allowed teachers to enrich their teaching methods and adapt them to students' learning needs.
Partnership between parents and school staff was effective in solving problems.
Workshops and training sessions were organized, one of which used the UNESCO Training Pack: Special Needs in the Classroom. In addition, we were in touch with different educational organizations and participated in debates and panels that took place in the country.
6. Value of the action
Family and child are respected. The family becomes a full-fledged member of the multidisciplinary team and with the help of teachers is better informed and more capable of making appropriate decisions.
Parent groups have a catalytic role as advocates on behalf of their children. They can participate in partnership with schools and local education authorities in introducing new ways of working in schools, in bringing about change at the school level, which will impact on policy change at the central level.
Parent groups as advocacy groups, guide schools and society towards respecting and accepting differences. A child treated with dignity from a young age, who is not isolated from his family and friends, who has the same opportunities for learning and acting, who is not subjected to ridicule and rejection by others, could in turn accept others without preconceived ideas but with respect and tolerance.
7. Conclusion
Finally, I would like to tell you about two cases that I hope would illustrate adequately our work and advocacy:
Jessica: Jessica lived abroad and had always been included in a regular school until her parents were transferred to Lebanon. As soon as they arrived, her family was comforted by a society that denies their daughter's right to education. As a result Jessica became aggressive and depressed. She lost her motivation, which lead her to regress to the extent, for example, that she started having problems recognizing letters, a skill that was previously mastered. All she had left was her parents' advocacy as well as their respect and love for her. We joined efforts and together we found her a school. Today, she is included, again, a student among others.
Mia: Contrary to what we were told, Mia went to school. Following her own pace, she completed her school program. Currently she is a kindergarten teacher's aide in a regular school. In her own way, she demonstrates the value of inclusion and the rich potential of everyone. This job has considerably enhanced her self-concept. Her self-confidence and her capabilities have prompted her supervisors to put her in charge of a child during extra-curricular activities. Mia treats this child with the same acceptance and respect that she experienced.
The school by demanding the full performance of her duties, recognizes her role. This allows her to affirm herself using her resources, to assert her independence from her family, and most importantly to plan her futures in accordance with her personal choice.
Including Students With Disabilities in Mainstream Schools
By Peter Evans of the Organisation for Economic Cooperation and Development, Paris
Education in the industrialised countries as represented by the Organisation for Economic Co-operation and Development (OECD) is undergoing radical change. The system that has served well for 150 years in creating citizens to flourish in 20th century economies is now struggling to adapt itself to new realities.
There is a whole range of issues that can be identified and which have influenced reforms. From the OECD's perspective, there is the knowledge economy, the changing nature of the labour market and changing demographic patterns (e.g. OECD, 1995). But in addition, there is the human rights agenda, including education for minority groups, women and those with disabilities that need no further elaboration here.
Employment for All
For OECD countries, the biggest single driving force behind policy development is employment for all. And this has applied to education policy development rather forcefully over the past decade. The central theme is that of the "knowledge economy" which is replacing the industrial economy. Such a concept, almost by definition, puts education at the core of reforms aimed at creating citizens who can work effectively in a society structured around this new organising principle.
Demographic patterns enter importantly into the analysis too. Since in OECD countries the birth rate has fallen below the replacement rate (Halsey, 1993). Populations are thus falling in size and only likely to be maintained through immigration. This means that societies can no longer afford to waste any human potential and education systems are viewed as the key players in developing includable and included citizens. Issues of ageing and retirement also take on a new significance. Since an important policy goal must be to keep this part of the population as active as possible. If for no other reason than to keep the cost of pensions under control.
There is really one rather straightforward outcome of this scenario. To maintain OECD economies at their level and to keep them growing, as many people as possible must be contributing positively. This means that education systems cannot be wasteful. They have to work towards the goal of helping all students to learn the skills necessary for success in the knowledge economy. This means better prepared students, with more knowledge, with the capabilities of being flexible in their learning, to have the social skills to be able to work in teams and to be able to carry on adapting throughout their lives, that is, in the policy language of the day, to become lifelong learners.
Thus in summary four key issues can be identified which are driving reforms in education systems in OECD countries:
1. Disability and education
It has to be taken as read that students with disabilities have a right to education. This is clear in the UN Charter on Children's Rights as well is in the various UNESCO declarations that have been part of the build-up to this important conference.
This section will then identify and discuss some important elements of education systems that appear to be neccessary in order to create an inclusive education system for all students. And here all means all.
I will begin by trying to clarify what has become a confused discussion relating to the concepts of disability and special educational need. These are not the same ideas even though in many countries they are used quite incorrectly inter-changeably. The distinction is very important for a discussion about education.
Disability is a term used to describe students who experience a range of different problems. They may have clear biological backgrounds e.g. blindness, deafness, physical impairment, intellectual impairment. They may have less clear biological causation e.g. emotional and behaviour difficulties, moderate learning difficulties, dyslexia. I say less clear because there is not complete agreement about this in the academic literature. Some, especially those with more mild learning difficulties only emerge as a result of schooling. They may have poor educational attainment which cause concern and testing by a psychologist for example may show they have a low IQ. If it is low enough there is an assumption that the cause has at least some biological determinant.
Special educational needs, on the other hand is a descriptive framework that puts at the analytic centre the interaction between the strengths and weaknesses that the child brings to the school and the strengths and weaknesses of the school and education system. Thus in this framework - and this is the crucial point - students with disabilities may not have special educational needs i.e. they can learn perfectly well in the system provided by the school. By the same token students without disabilities may have special educational needs.
This principle applies to all students no matter how severe their learning difficulties. The position taken, is that all children are educable.
Once it has been accepted that schools have a part to play in constructing the special educational needs of students then it follows that the most fully adapted school operating in a supportive education policy context can successfully educate all students. Of course the more heavy the disability the more the schools must adapt.
In this way full inclusion can become a reality.
OECD Studies
However, to achieve full inclusion, and provide schools which can respond to the full diversity of the human condition, there must be some modification to traditional forms of educational delivery. This next section identifies key themes for developing inclusive schools, based on recent work completed at OECD/CERI in Australia, Canada, Denmark, Germany, Iceland, Italy, UK and USA.
The issues to be outlined do not have big cost implications beyond that implied for the normal expansion of the education system to provide for all children. So that education of disabled students does not become a major cause célèbre in countries, the central idea being developed here is that education systems that can be steered in the way proposed will be able to respond to the needs of disabled students when the time comes. As it inevitably will.
It is worth pointing out that in OECD countries the costs of educating disabled students is higher than for non-disabled students. There is no point in hiding this. Better teacher/adult pupil ratios are required. However, the costs of special schools are even greater. Furthermore, work carried out at OECD in a number of countries (Evans, 1993; OECD 1995, 1999) all suggests that performance outcomes for students with disabilities are better in inclusive settings. While formal cost-effectiveness studies have not been completed as yet, the data are indicative that inclusive education school provision would be more cost-effective than segregated provision.
Furthermore, the skills that special education teachers have are often highly sought after. If they are all concentrated in special schools they are not available for use in regular schools to the benefit of all students. The schools' organisational frameworks that develop in inclusive schools certainly lead to the wide use of these teaching skills.
2. Key policy and practical issues
OECD (1999) has identified 10 areas that need to be developed in order that inclusive education can work. Each of these areas has self-evident policy implications across a wide range of areas.
10 areas to support inclusive
education:
1. Schools, teachers and
school administrators and all concerned have to be taught that it is their
responsibility to educate all children. This follows from a human rights
agenda. If staff and managers do not have the appropriate attitudes then
they are difficult to change once a system is fully working. Buildings
must of course be accessible.
2. Schools must be set up to be learning organisations. That is they must be able to adapt themselves to new demands both of national economies and student diversities and grow over time in their ability to be meet individual student needs. There is a crucial role for school management here and their training.
3. This means that they must be able to adapt their own teaching methods and develop their own curriculum resources so that all students can have access to learning. Usable and relevant curriculum materials are not available from publishers, even in OECD countries. The importance of this aspect cannot be over-stressed.
4. There is also a great responsibility here for teacher training and for the in-service education of teachers (INSET). It is imperative that the appropriate attitudes, skills and competencies are developed in teachers in the precious years of training. There is a strong case for INSET to be school based and planned to complement the learning that takes place in a learning organisation on a day to day basis.
5. They must also recognise limits to competence and learn how to work with other specially trained teachers in the school, for example developing team teaching methods, and with outside agencies. Schools, however hard they try, cannot do everything. Thus teaching staff must learn to work with other professionals and organisations in for instance the voluntary sector.
6. Who in turn must be prepared to help teachers and schools learn how to manage for themselves- this is part of the learning organisation approach. External experts and professionals must themselves learn to pass on their skills to teachers and not in the first instance work with the children themselves. This model empowers teachers and encourages responsibility for all students.
7. Parents and community must also be strongly involved. So much of a child's successful education and socialisation depends on parents and other adults and children who form part of the community. Involvement in the communities working, social and political life is also part being included and this aspect cannot be ignored.
8. There also needs to be proper public accountability, clarity and balance in funding and both summative and formative assessment procedures in place. These are all essential features of good practice in education systems. They provide feedback at various levels to the tax-paying public (who are really the funders), policy-makers, school administrators, parents, teachers and students about how well the system is working. In addition they can serve the diagnostic function of helping to identify where systems are failing if they appear to be working less well than anticipated.
9. Funding is an especially important issue of clear policy significance. Many countries still have funding policies which bias placement of disabled students. For instance, additional funding can only be made available if the student is in a special school. Countries are looking closely at these issues, so that placement decisions are not unduly influenced by funding considerations. Countries operate many different models of funding and so different solutions will apply accordingly. Nevertheless, whatever models are used the goal should be that they do not bias placement decisions.
10. And of course there is a need for leadership in the development of appropriate government policy and in its implementation at both central and local levels. This has been a feature which has too often been lacking (see The UK prime ministers recent speech at Oxford University) in education. In the past a certain laissez-faire approach has worked but the future requires a more interventionist perspective.
3. Conclusion
Sooner or later all education systems will have to extend themselves to be able to respond to the full range of student diversity, including those with disabilities, and to include them all in the educational process. This is a sine qua non of the implication of lifelong learning for all and the advent of the knowledge economy. Experience in OECD countries tells us that in the right circumstances this can work well; not only for students with disabilities but for all students. This paper assumes that this statement is true and identifies how it can happen based on practical examples of good practice in OECD countries (OECD, 1999). There is no point in ignoring these facts. There is every point in planning for inclusion.
In the Cologne Charter on lifelong learning, the G8 countries have committed themselves to help to achieve the goal of education for all in all the countries of the world for the future knowledge society.
We must keep this promise always in sight.
References
Evans, P. (1993) European Journal of Special Needs Education, Volume 8(3) Whole issue.
Halsey, A.H. (1993) Changes in the family. In G. Pugh (Ed.), 30 Years of Change for Children. London: National Children's Bureau.
OECD (1995) Integrating students with special needs into mainstream schools. Paris, OECD.
OECD (1999) Inclusive education at work. Students with disabilities in mainstream schools. Paris, OECD.
United Nations (1989) UN
convention on the rights of the child. New York, United Nations.
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