The inclusion of students with Down syndrome in New Zealand schools
Bernadette Holden
Registered Teacher, Registered Psychologist and Service Leader (Inclusive Services) based at the Specialist Education Service, (SES) Lower Hutt.
Pauline Stewart
Registered Teacher, Registered Psychologist and Service Leader (Inclusive Services) based at the Specialist Education Service (SES) in Southland.
Guidelines for successful inclusion based on the practical experience of two teachers working for Specialist Education Services in New Zealand.
IntroductionInclusive Education has evolved as a movement to challenge exclusionary policies and practices and has gained momentum over the past decade. Inclusion has become the most effective approach to address the learning needs of all students in regular schools and classrooms.[1]
The inclusion of students with Down syndrome in regular classes in New Zealand has been accepted practice for over ten years. Even before this some students with Down syndrome were educated in the mainstream. Sometimes this came about through rural necessity (there were no local special schools or special classes) and sometimes through parental choice. Today, many students with Down syndrome are included in their regular, neighbourhood schools and many parents, teachers and education specialists believe that all students with Down syndrome can be successfully included.
There are numerous examples of successful inclusion in regular schools evident throughout New Zealand (Service Leaders, Inclusive Services, SES, personal communication). Often these instances are simply accepted as appropriate day-to-day practice. Research suggests[2] that students with special needs who are educated in mainstream settings engage with a wider social group and more often obtain paid, competitive employment in later life (compared to students with special needs educated in segregated settings). Kavermann and Bourke in 1998[3] suggest that there is considerable support for including students with special education needs in the regular secondary school class and that teachers and teacher aides usually demonstrate a commitment to exploring ways to make inclusion successful. The debate is no longer about the rights of children to be included, rather it is about how they can best be included. The end result of this is that it is now more likely than ever before that regular classroom teachers will find themselves teaching young people with Down syndrome.
All students in New Zealand must have their education programme based on the New Zealand Curriculum. For most students, including some with Down syndrome, participation in all areas of schooling is possible without adaptations or modifications to the curriculum. For some, adaptations are needed. Curriculum adaptations and modifications can range from quite simple measures (such as providing written guides) through to the application of assistive technologies. The Special Education 2000 (SE2000) policy sets in place a system of resourcing for students who have high or very high special needs. Most students with Down syndrome have been verified under SE2000 as having high or very high needs and qualify for the Ongoing and Transitional Resourcing Scheme. A major advantage of the SE 2000 policy is that it removes much of the term to term funding uncertainty that used to exist. A further advantage is that the allocation and use of funding is a far more transparent process.
To support the inclusion of all students the Ministry of Education have published the Independent Educational Plans Guidelines (1998)[4] and the Guidelines for Assistive Equipment: Supporting Students with Special Education Needs (2000).[5]
This article is about those modifications and adaptations that are seen to be particularly helpful for students with Down syndrome. Although teacher aide (paraprofessional) support may be necessary to support some of the modifications and adaptations it is important to guard against over-dependence on adults as this can interfere with the development of peer interactions, reduce personal control, separate student from classmates and create a high level of dependence.[6]
The suggestions contained here have been gathered from both teachers and the specialists providing students with Down syndrome with support. In addition many of the practices can be found within the literature on including students with disabilities within mainstream settings. Although the suggestions here will provide practical assistance for teachers who have children with Down syndrome in their classes, many of the suggestions are appropriate for learners with a wide range of abilities and special needs.
Down syndrome : Some basic factsDown syndrome is the result of an extra chromosome 21 in every cell. It is one of the most common genetic birth conditions occurring in around 1 in every 600 - 700 babies.[7] Although the incidence of Down syndrome increases with the age of the mother, most are born to mothers under 30.[7]
Although people with Down syndrome have an element of intellectual disability, it is no more possible to give a precise statement about the future potential of a child with Down syndrome than it is to give such a statement for any other child. We now know that there is a wide range of cognitive ability among these young people. This ranges from those with very significant intellectual impairment to those with moderate delays. [8-14]
Specific characteristics seen in this group of students[11,15] include:
* difficulties with auditory short-term memory
* speech and language difficulties
* cognitive delay
* sensory difficulties (hearing and vision)
* difficulty with generalising from one situation or setting to another
* strong visual awareness and visual learning skills
* short concentration span
* delays in fine and gross motor skill development
* auditory processing difficultiesWorking with students and young people with Down syndrome
Our model (Figure 1) for working with students with Down syndrome[16] has five components that need to be considered for successful inclusion; structure, teaching approach, environmental adaptation, social and behavioural adaptation, and curriculum adaptation.
Figure 1. Essential components to consider for the successful inclusion of students with Down syndrome in the school setting STRUCTURE TEACHING
APPROACH ENVIRONMENTAL
ADAPTATION SOCIAL AND
BEHAVIOURAL
ADAPTATION CURRICULUM
ADAPTATIONThis model, supported by the practical strategies gathered by SES Inclusive Services teams, provides a guide to the domains that need to be considered during curriculum adaptation. Many of the ideas that fit within this model are based on both research and good practice observed in schools. Again it should be noted this model and the strategies that support it are appropriate for a wide range of students, not simply for those with Down Syndrome.
StructureMany students with Down syndrome achieve better when they are learning in structured environments. Structure allows students to be able to predict the sequences both in the school day and during specific educational programmes. For many young people, and particularly for those with Down syndrome, predictable, easily seen and understood structures will increase success and decrease anxiety.
Good practice structure examples include:
* Individual Education Plans (IEP). These record the major goals and the way that they will be achieved. IEPs are a team process that include teachers, parents/caregivers and any one else who has a responsibility for the young person’s educational programme. The setting of goals and the writing of the IEP can of course also involve the student. IEPs are at the core of the education process for many students.
* visually mediated communications, individualised to particular students.[17] These include easily read timetables, colour coded maps of school and community environments, work schedules, and choice boards (charts with pictures of activities to aid choices).
* communication notebooks, used both at school and between school and home. These allow families and teachers to easily share events, activities, successes and issues.
* individualised telephone books for social skill development. Students can use these to call friends and to initiate contacts (the initiation of social contact is a skill that needs to be explicitly taught to many children who have special needs).
* task outlines, describing the beginning, middle and end of each task so that clear expectations are provided.
* personalised instructions that focus the individual’s attention on the task and activity at hand.
* explaining the day’s timetable at the beginning of each day before moving onto specific activities. As activities are completed they can be crossed off.Teaching approach
Students with Down syndrome benefit from seeing the overall task before specific components of a task are attempted. This teaching approach allows for easy prediction on the part of the student and again will contribute to the reduction of anxiety.
Good practice teaching approach examples include:
* task analysis and chaining. Students learn through a series of do this and then this steps. This chaining procedure can be used to systematically teach sequences.[18] For example, when teaching sandwich making, each step is listed and then taught as a sequence just as it would be when teaching how-to-use calculators, basic maths calculations or letter shapes for writing.
* numbers teaching through ‘100s’ boards. Number boards are powerful learning tools (and have been for generations of children) when developing early maths understandings. Manipulating actual numbers on the board is beneficial at all stages.
* daily charts for learning letters, numbers, sequences of days and months. Always stand away from the chart and use a pointer to ensure that the student can see the whole alphabet or series of numbers.Environmental adaptation
All students learn best when the learning environment is adjusted to meet their specific needs. Whenever young people experience difficulties it is worthwhile to check that the barriers to their learning are not the result of being unable to hear or unable to see. Teachers need to be sensitive to the learning environment of children with Down syndrome as these youngsters may not have the communication, confidence or social skills to be able to say what is wrong.
Good practice environmental adaptation examples include:
* ensuring that the student is seated within a group in the main body of the classroom (avoiding social isolation). This can be done even when additional space may be needed for assistive technology or ancillary help.
* recognising and compensating for hearing difficulties. Current research indicates that up to 78% of all children with Down syndrome have a conductive hearing loss.[14] A ‘pass’ on routine school testing may give a false positive as hearing is likely to fluctuate throughout the year.
* dedicated spaces, clearly named, and available for the storage and organisation of personal materials.
* a variety of materials for use in written work; whiteboard, blackboard, thick lined paper, felt tip pens, thick pens, regular pens and crayons, for example. Children with Down syndrome often have fine motor difficulties (difficulties with writing and using ball points and pencils). The use of felt tip pens on laminated sheets or on paper can provide motivation for written work because visual success can be achieved easily.
* excellent lighting in the classroom. Many students with Down syndrome have difficulty seeing.
* auditory sound field equipment set up in the classroom may benefit students who have difficulty focusing on the speaker above the noise in a regular classroom environment.Social/Behavioural considerations
All students need to feel they are valued. This is the key to both immediate self-esteem and, for the longer term, the development of the skills and confidence necessary for living as independent, socially capable adults. Developing relationships and friendships can be difficult for young people with Down syndrome. It is important for teachers to expect and encourage appropriate social interactions between the student with Down syndrome and his or her peers. The teaching of specific social skills such as initiating a conversation, taking turns and listening to others can be very helpful and will probably create social interactions that would simply not take place if these skills were not taught. Understanding the thoughts, intentions, desires and emotions of others is an area of particular difficulty for students with Down syndrome.
Good practice social/behavioural examples include:
* always modelling appropriate interactions with students at all times. For students with special needs this can be critical as these young people are more likely to become confused when the adult behaviour around them is either punitive or inconsistent
* encouraging group participation through the use of cooperative learning strategies and buddy systems.[19]
* providing programmes in the area of ‘mind reading’.[20] These programmes teach the skills for such things as; reading facial expressions and recognising and understanding emotions.
* teaching social skills in context. Examples of strategies to assist these skills include; assertiveness training,[21] role plays based on positive and negative examples,[22] circle of friends,[23] cognitive behavioural therapy (Stewart & Kendall, 1997), and social stories.[24-26]
* encouraging, expecting and providing social opportunities at home and school. These include telephoning friends, inviting peers over, participating in organised groups such as scouts, brownies, and sports clubs, attending the school disco, the annual ball and school camps.
* providing opportunities for learning age appropriate sexuality behaviour (in accordance with the curriculum guidelines). This is done in consultation with parents and with specialist advice (for example in consultation with an SES advisor or psychologist). Content might include naming of body parts, menstruation, appropriate touching, safety, masturbation and relationships.[27]
* increasing the student’s independence in the self monitoring of avoidance strategies.[28, 12]Curriculum adaptation
Curriculum adaptations are not unique to young people with Down syndrome. Many young people require their educational programmes to be adapted. New Zealand teachers are skilled at providing multi-level programmes and within our education system there is recognition of the concept that one size does not fit all. The extent of curriculum adaptation will vary across the seven learning areas with some areas requiring quite extensive changes and others only minimal change. Curriculum adaptation will lead to greater opportunities for individual success and as success occurs there is a positive effect on self-esteem. This is true for both the student and the teacher.
Good practice curriculum adaptation examples include:
* increasing the opportunities for success. Although all students need frequent positive reinforcement research indicates that students with Down Syndrome require four times more positive reinforcement than their peers.[29] Although the provision of such high levels of reinforcement can seem daunting it can be provided in a variety of ways and forms. Examples of this include the use of both tangible and non-tangible reinforcers, peer reinforcement and simple star charts.
* reducing the complexity of tasks. Young people are often required to understand complex multi-dimensional tasks presented to them in the form of complex multi-dimensional directions. For all students, and particularly for those with Down syndrome, it is important that the complexity of tasks is reduced. This can be done through the breaking down of tasks in to their component parts and the teaching of the parts as a sequence.
* using appropriate, simple language and ensuring that the instruction/direction is understood. It often helps to use concrete examples.
* providing numerous opportunities for practice. The Rainbow Reading Programme (1998)[30] which involves tape assisted reading, has been used successfully with young people with Down syndrome.
* focusing on the essential skills that will assist in the development of independence in post school years.[31] These skills include managing money (and money machines), arranging social activities and social lives, simple budgeting, self-care and establishing and sustaining friendships.
* ensuring that all curriculum activities and tasks are both age and ability appropriate. Although this is sometimes difficult it is important, for example, that the reading material is both age and ability appropriate
* providing assistive technology, both hardware and software. Examples of commercially developed computer software suitable for students is available through the Centre for Assistive Technology at Specialist Education Services.
* arranging for additional physical activities and programmes to be available. Programmes such as the Sensory Awareness Programme[32] which is designed to improve gross motor skills and the Halberg Sports Programme, where students can meet others with physical and intellectual challenges can be valuable adjuncts to the school curriculum.Conclusion
There are a number of key factors which appear to increase the likelihood of successful inclusion in a regular class setting. These factors include that each student with Down syndrome is a valued member of the school community and all team members have high expectations of the student. It is important that there is a staff member who takes the key co-ordination role for the student. In addition class teachers must feel empowered and supported in providing appropriate curriculum and programmes for all the students in their class, including those with Down syndrome. This can be achieved through ongoing training, access to specialist support and therapies, robust team based IEP development and true partnerships between the school, the parents or caregivers and external specialist agencies.
The inclusion of students with Down syndrome, as indicated earlier in this article, is no longer unusual. The challenges that arise from this include outcome research questions (do children with Down syndrome fair better in the long term from inclusive settings?) as well as day-to-day teaching and learning practice issues. In the meantime the identification of good practice issues, such as those outlined in this article will provide the initial guidance for the meeting of both of these challenges.
Inclusion resourcesThe following items are available from the Down Syndrome Educational Trust'sResources brochure:
* Education for individuals with Down syndrome – An overview. By Sue Buckley and Gillian Bird (2000). Portsmouth, UK: The Down Syndrome Educational Trust. ISBN: 1-903806-31-3. Available online: http://www.down-syndrome.info/library/dsii/16/01/
* Education for individuals with Down syndrome – Whole school issues. By Gillian Bird and Sue Buckley (in press). Portsmouth, UK: The Down Syndrome Educational Trust. Available online: http://www.down-syndrome.info/library/dsii/16/05/
* Accessing the curriculum – Strategies for differentiation for pupils with Down syndrome (5-11 years). By Gillian Bird, Sandy Alton and Cecilie Mackinnon (2000). Portsmouth, UK: The Down Syndrome Educational Trust. ISBN: 1-903806-28-3. Available online: http://www.down-syndrome.info/library/dsii/16/07/
* Children with Down’s syndrome: A guide for teachers and learning support assistants in mainstream Primary and Secondary schools. By Stephanie Lorenz (1998). London: David Fulton Publishers Ltd. ISBN:1-85346-506-2.References
1. van Steenladt, D (ed.) (2000) The Journey to Inclusive Schools. Brussels, Belgium: Inclusion International.
2. Colley, D., and Jamison, D. (1998) Post School Results for Youth With Disabilities: Key Indicators and Policy Implications. Career Development for Exceptional Individuals. Fall, 1998, 21:2. pp.145-160
3. Kavermann, A & Bourke, R. (1998) Creating Inclusive Practices in Secondary School Settings. Issues and Challenges. A paper presented at the Specialist Education Services Conference ‘Knowledge into Practice: Education for Success in the Community’.
4. Ministry of Education (1998) The IEP Guidelines: Planning for students with Special Education Needs. Ministry of Education, NZ, Crown Copyright.5. Ministry of Education (2000) Assistive Equipment: Supporting Students with Special Education Needs. NZ: Crown Copyright.
6. Giangreco, M., Edelman, S., Luiselli, T., MacFarland, Z. (1997) Helping or Hovering? Effects of Instructional Assistant Proximity on Students with Disabilities. Exceptional Children, 64(1), 7-18. The Council for Exceptional Children.
7. Down Syndrome Association of Victoria. Home Page: http://www.dsav.asn.au
8. Alton, S. (1998) Differentiation not discrimination: Delivering the curriculum for children with Down Syndrome in Mainstream Schools. Support for Learning, 13(4), 167-173.
9. Buckley, S. and Bird, G. (1994) Meeting the Educational Needs of Children with Down’s Syndrome: A Handbook for Teachers. University of Portsmouth. Available online: http://www.down-syndrome.info/library/books/meeting-ed-needs/
10. Buckley, S. and Bird, G. (1993) Teaching Children with Down’s Syndrome to Read. Down Syndrome Research and Practice, 1(1), 34-9.
11. Lorenz, S. (1998) Children with Down’s Syndrome: A Guide for Teachers and Learning Support Assistants in Mainstream Primary and Secondary Schools. David Fulton Publishers Ltd, Ormond House, 26-27 Boswell Street, London.
12. Wishart, J. (1993) Learning the Hard Way: Avoidance strategies in young children with Down’s Syndrome. Down Syndrome Research and Practice, 1 (2), 47-55. Available online: http://www.down-syndrome.info/library/periodicals/dsrp/01/2/047/
13. Wishart, J. (2000) Learning in Young Children with Down Syndrome: Public perceptions: Empirical Evidence. Paper presented at the 7th World Congress on Down Syndrome, Sydney.
14. Hardman, C. & Wheatley, M. (2000) Working Together- Assessment and Management of Hearing Loss. Paper presented at The 7th World Down Syndrome Congress: Sydney.
15. Buckley, S (2000) Perspectives on Down Syndrome from a twenty year Research Programme. Paper presented at the 7th World Congress on Down Syndrome, Sydney.
16. Holden, B & Stewart, P. (2000) Celebrating Success- Practical Strategies for Use with Students with Down Syndrome. A paper presented at the 7th World Down Syndrome Congress, Sydney, Australia, March 2000.
17. Hodgdon, L. (1995) Visual Strategies for Improving Communication. Volume 1: Practical Supports for School and Home. Quirk Roberts Publishing, PO Box 71, Troy Michigan, 48099-0071.
18. Donnellan, A., LaVigna, G., Nanette, N., Fassbender, L. (1998) Progress Without Punishment: Effective Approaches for Learners with Behaviour Problems. Teachers College Press, Colombia University New York, NY 10027.
19. Brown, D & Thomson, C. (2000) Co-operative learning in New Zealand Schools. Palmerston North: Dunmore Press.
20. Howlin, P; Baron-Cohen, S. & Hadwin, J. (1999) Teaching Children with Autism to Mind Read. A Practical Guide. West Sussex: John Wiley & Sons Ltd.
21. McLain, W & Lewis, E. (1998) Anger Management Curriculum. Positive Practices, 3(3), 10.
22. Walker, H., McConnell, D., Holmes, B., Todis, J., Walker, J. & Golden, N. (1983) The Walker Social Skills Curriculum: The ACCEPTS Programme. A Curriculum for Children’s Effective Peer and Teacher Skills. Texas: Pro-Ed.
23. Whitaker, P., Baratt, P., Joy, H., Potter, M. and Thomas, G. (1998) Children with autism and peer group support: using ‘circles of friends’. British Journal of Special Education, 25(2), 60-64.
24. Stewart, P. & Kendall, P. (1997) Cognitive Behavioural Therapy for Impulsive Children. Group Treatment Manual, Invercargill, NZ: Specialist Education Services.
25. Gray, C. (1994) The New Social Story Book. Michigan, USA: Future Horizons.
26. Rowe, C. (1999) Do social stories benefit children with autism in mainstream primary schools? British Journal of Special Education, 26(1), 12 - 14.
27. Canadian Down Syndrome Society (no date). Sexuality, Relationships and Adolescents with Down Syndrome. A booklet for Parents and Caregivers.
28. Brown, V. (1999) Behaviour Management (2nd ed.). Down Syndrome Association of South Australia.
29. Squire, A. Thornley, J. (1999) Guidelines for Middle and Secondary Schools. Down Syndrome Society of South Australia Inc.
30. Rainbow Reading Programme Assessment Manual. (1998) Rainbow Reading Programme Ltd, NZ: Nelson.
31. Rogan, P. (2000) Transition. A paper presented at the ASENZ Conference 2000 on Supported Employment: The future in Jobs for People with Disability.
32. Jillings, B. (1996) Sensory Awareness Programme. Sport Southland, New Zealand.