Educating Learners with Down Syndrome

Research, theory, and practice with children and adolescents

Rhonda Faragher, Barbara Clarke, Rhonda Faragher, Barbara Clarke

• Publisher: Routledge
• Year: 2013
• eBook ISBN: 9781134673421
• Topic: Education
• Subtopic: Education General

For individuals with Down syndrome, the extent of the effect of intellectual disability depends largely on the degree of provision of appropriate support and intervention. In Educating Learners with Down Syndrome, editors Rhonda Faragher and Barbara Clarke have brought together a number of expert contributors, whose chapters review recent findings in the field of DS education, highlight promising practices, and identify areas for future research.

While the emphasis is primarily on the school years, links to early intervention and to life post-16 are made, with chapters organized into three parts: conceptual overview of issues in learning and teaching, learning mathematics, and literacy development. The book is also united by the cohesive themes of assessment, evidence-based practice, and inclusive practices.

Educating Learners with Down Syndrome importantly incorporates the voices of individuals with Down syndrome, whose personal narratives add significance to the research mission of the text and demonstrate the authors' inclusive philosophy. Aimed at researchers, teacher educators, higher degree students, and policy makers, this book is the first of its kind to provide a compendium of research on educating learners with Down syndrome.

Part I

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Issues in learning and teaching

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Chapter 1

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A lifespan approach to learning in the context of quality of life

Roy I. Brown

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Abstract

The education of children with Down syndrome needs to be re-examined in the context of changing philosophies, research, and practice. This re-examination includes the relevance of quality of life to education, community, and home living, how concepts and principles of quality of life can be put together to promote and influence the lives of people with Down syndrome in education and society, and how family quality of life is involved and can influence education and development. The relationship of the concepts and principles to professional behaviour of educational personnel is considered and finally linked to the ways in which quality of life research can contribute to the education and overall development of children with Down syndrome.

Introduction

This chapter is about quality of life (QoL) and Down syndrome as it applies to education. QoL is not an issue that has been significantly researched in the field of Down syndrome, and few studies have been concerned with education and quality of life. However, there is considerable literature in intellectual and developmental disabilities and some of the studies have included people with Down syndrome (see review by Cunningham & Brown, in press). Timmons (1993) noted this in relation to schooling and intellectual disabilities and since then little progress of this aspect of quality of life research and applications has been made (see also Timmons & Brown, 1997).

In this chapter, it is argued that QoL is a useful model or approach to educating learners with Down syndrome, not least because it encourages us to look at Down syndrome in a rather different light (Brown, 1994). Quality of life is about “being, belonging, and becoming”. It provides an opportunity to see education from the perspective of lifespan. This is critical because the current outcomes for people with Down syndrome are highly varied and differences that occur are partly the result of genetics but also of environment, and a large part of the environment in developing years is education. It is this aspect with which this chapter is particularly concerned and, unless research and then practice takes a lifespan view, the goals of education for people with Down syndrome are likely to be negatively skewed by lack of possibilities.

Why be concerned?

Why should we be concerned with education of people with Down syndrome? In addition to reasons of family love, and ethical responsibilities associated with bringing a child into the world and enabling them, in many cases, to survive the very early years through medical intervention and parental care and support, there are other reasons. Having started with care and support, there is a need to carry this across the lifespan. That is true for everyone, but some individuals need more specialized support and care that entails particularly effective education and teaching.

Children with Down syndrome survive in the developed world a lot longer than they used to, though it is generally agreed that life expectancy may be greater or less depending on the environment in which the child is raised. From a life expectancy of 11 years on average at the beginning of the twentieth century in the economically advantaged world, to an average span of between 55 and 60 years now (Baird & Sadovnick, 1987; Torr, Strydom, Patti, & Jokinen, 2010), society is faced with either traditional care, as in the first three-quarters of the twentieth century, or providing learning and preparation for a full life over a long lifespan. The implications are enormous. People who can support themselves, in part or whole, reduce the stresses on others. Indeed, they can enhance the lives of others through social and economic contributions. Although we provide more inclusive education than we used to, effective preparation for an adult quality of life is urgently required to avoid the challenges of care and support being placed on to the shoulders of ageing family members.

How do we respond to these challenges?

One way to respond to the challenges of preparation for a long adulthood is to consider not only the well-being of the individual but also family members, and frontline professionals. Any broadly based and effective learning and development process, where specific challenges are involved, must be based on a collaborative approach. Part of that approach relates to research and the involvement of colleagues who work together to carry out research. This includes the links between policy and practice, and evaluation of the needs and support provided in the education of people with Down syndrome.

In terms of educators, Mitchell (2009, p. 422) made this point very clearly:

Educators are increasingly expected to be responsible not only for helping learners to achieve the best possible outcomes, but also for using the most scientifically valid methods to achieve this. In the United States, the No Child Left Behind law requires teachers to use “scientific, research-based programs”. In other words, teaching is increasingly being expected to become an evidence-based profession.

One of the essential features of education is that it needs to support and provide for quality of life over the lifespan, which requires teachers and others to imagine what life can be like for people with Down syndrome in their adult years. The features of quality of life, as portrayed in the research and practice literature, can help provide an effective framework for such development. It is conceptual, formalized, and structured with a lifespan approach. Yet education, and particularly education directed towards children with Down syndrome, often does not make use of such a framework on an assessed, planned, programmed, and evaluated basis, with both present and future goals in mind.

In this chapter, the various concepts and principles of quality of life are described and illustrated through vignettes and research that have the potential to bridge the gap in and between formal education, social aspects of learning, emotional and informal aspects of family experiences, and long-term needs.

From an educational and community perspective, there are two aspects which are conceptually related to value systems and motivation. First is the need to have an image of the future that people with Down syndrome may attain, recognizing that many are capable of reaching competent standards of performance in a wide range of activities (see Brown [Ed.], Adults with Down Syndrome series, 2004–2008 examples—see addendum to the series). The examples cover adolescent and adult activities for the most part but illustrate the types of growth and development that can continue well in to adult life and could be fostered much earlier in the developmental cycle. Second, it is essential to recognize that, since the 1960s, considerable variation of demonstrated ability and attainment amongst people with Down syndrome has been noted (for example, see Gibson, 1978).

There is some indication that ability and attainment levels of people with Down syndrome may be rising and no doubt improvement in health and education are important in this context. Borthwick-Duffey (1996) has argued that environmental factors for people with Down syndrome, such as social attitudes and medical intervention, can play an important part in the development of intelligence and therefore it is reasonable to expect the possibility of increasing cognitive abilities if support and intervention continue to improve. The issues of social intelligence as argued by Sternberg (cited in Kaufman & Grigorenko, 2009) are relevant in this context because the accent on social skill development in many programmes, both for children and for adults, may have a major payoff in terms of cognitive development, particularly if a quality of life approach is applied consistently within educational and social programmes.

The majority of children with Down syndrome can do more than most teachers and other professionals expect. Indeed, this is what parents in the various Down syndrome associations have demonstrated. The 40-year (and on-going) longitudinal study by Carr (2009) illustrates that children's largely positive progress over the years seems to have surprised many professionals. The connection and collaboration between education, parent experience and parent-developed schools (such as “experimental” schools), and research development and refinement become critical in this context. Underestimation of people with Down syndrome affects how we intervene, how we help children view their future, and how we ensure that education and various supports bring about improved self-image and performance for quality of life over the lifespan.

It is recognized that people with Down syndrome vary, with some who are remarkably able or with the potential to develop further, and others who are less so. Potential is often seen as what a child is able to do given the right circumstances. An analogy might be that potential is like a tank for water but unless the water (the person's environment) is fed into it, the potential or fulfilment is not achieved. But it is now appropriate to look at potential in a new way because research shows that the brain itself modifies if the appropriate environment is provided (see Doidge, 2007). This aspect of brain development applies to social enrichment, such as friendship networks, which underscore the importance of social inclusion over the lifespan (Bennett, Schneider, Tang, Arnold, & Wilson, 2006).

Issues of methodology

The methodology for research in quality of life is diverse but, like the early stages of research in any science, observation, recording, and forming hypotheses and questions are critical. There are major differences in carrying out applied research for samples are generally not random but convenience samples. Variables are multiple and need to be teased out and, for this, strategies such as triangulation need to be employed. But ideally this does not rely just on replication because getting the same results through replication may simply be because the same errors are involved. Triangulation needs to come from different approaches to asking the same or similar questions. Both quantitative and qualitative studies are employed and a combination of approaches leads to not only numerical data and analysis, but also commentary, which gives depth to an understanding of the numerical results and enhances the process of question and hypothesis generation. Further, as we shall see as we examine quality of life, the approach requires linking the research to practice framework to policy development, which in some instances may lead to radical changes in both direction and focus (Schalock & Verdugo, 2012).

Quality of life research not only uses traditional means of measurement and exploration but also requires additional and innovative approaches to explore the move from purely objective assessment to concerns about individual perception and thinking amongst individuals with Down syndrome.

Quality of life, if it is to fulfil its potential, has to bridge the gap from traditional science, with its accent on measurement, including reliability and validity, along with a rigorous accounting of error, to the newer paradigms of science which accent individual variability and personal expression, and individual accounts of personal experience of disability, and lead through model building to a more measured approach to the field. … It can be argued that quality of life structures reflect the development of science from observation through model building with pragmatic definition to measurement in social behavioural terms.

(adapted from Brown, 1997, p. 7)

A QoL model looks at personal internal processes and in so doing suggests the importance of what some call a subjective field of endeavour (Schalock et al., 2002; Cummins, 1997). I now prefer to refer to this as perceptual, which can be recorded, measured, and interpreted. A field of endeavour which until recently was frequently not seen as part of science. In the field of Down syndrome and intellectual disabilities, this has opened up the “black box” as we can begin to explore, using research methodology, the personal thinking, aspiration, choices, and mental imagery of people with Down syndrome (see Brown & Bullitis, 2006). Further, people with Down syndrome become partners in research and at times have their names recorded as co-authors if they so wish. This is an ethical issue, and an important one, since it provides dignity, status, and a voice for their developing self-image.

Quality of life: its conceptualization and principles

Quality of life includes a blend of qualitative and quantitative methodologies set in a range of concepts and principles, which sees a person with intellectual or developmental disability as an equal member of society with the potential for development under appropriate circumstances. The question is, in each instance, what are the appropriate circumstances?

Over the past 30 years or so, quality of life has become an increasingly important and focusing approach to support intervention for people with intellectual impairment. More recently, there has been the development of the concept of family quality of life. Although a number of demonstration projects and conceptual studies have been developed in both areas, it is only in recent times that quality of life has been practiced within services and agencies to any large degree and very little in the field of education. Unfortunately, the concepts and principles involved in quality of life have often been misunderstood and have not been entirely supported in the field of education, nor has the educational research field applied an holistic QoL model. There is often a gap between policy, management, and frontline teacher intervention and support, which has led to some rough patches in terms of the realistic development of quality of life.

It is important at the outset to indicate that quality of life should be regarded as a sensitizing concept (Taylor, 1994), which enables educators to modify the approaches they make towards persons with disability. The QoL model has followed but also has arisen out of other concepts and practices, such as normalization and inclusion. However, there are a number of very important differences—for example, the importance of individual choices at times may conflict with tenets of normalization. Specialized facilities for children with extreme social and behavioural challenges may be r...

Table of contents

• Cover Page
• Table Of Contents
• Educating Learners with Down Syndrome
• Educating Learners with Down Syndrome
• PART I Issues in learning and teaching
• 1 A lifespan approach to learning in the context of quality of life
• 2 Cognitive strengths and weaknesses for informing educational practice
• 3 Mastery motivation in children with Down syndrome: promoting and sustaining interest in learning
• 4 Enhancing learning for children with Down syndrome
• PART II Learning mathematics
• 5 Mathematics profile of the learner with Down syndrome
• 6 Developing early number concepts for children with Down syndrome
• 7 Research on number knowledge of students with Down syndrome: an experience from Indonesia
• 8 Learning mathematics in the secondary school: possibilities for students with Down syndrome
• PART III Literacy development
• 9 Developing the reading skills of children with Down syndrome
• 10 Challenging literate invisibility: continuing literacy education for young adults and adults with Down syndrome
• 11 Down syndrome: a story from a developing country
• 12 Where we are, where we would like to be, and (perhaps) how we get there