Disability and Child Development: Integrating the Concepts
"Neurodevelopmental disabilities" refer to a diverse group of conditions and disorders that begin in the early years of children's lives, and influence their development, often for life. As professionals working in the field of developmental disability we may fail to recognize and link two important and related concepts - "development" and "disability". Theorists writing about human development have traditionally done so from the perspective of "normal" or "typical" development, with little attention to the many variations that include "disability". In the same way, schools of thought about the "treatment" of childhood (developmental) disability have focused primarily on managing the impairments that underlie the disabilities, with less attention paid to the ways that treatment can promote "normal" development (Rosenbaum, 2009).
The purpose of this Keeping Current is to review the concern that, rather than being integrated, these two streams of thought have traditionally run more or less in parallel. To do this, we first explore briefly the main tenets of several key 20th century concepts of child development. Next, we consider the assumptions underlying a number of developmental intervention approaches. Finally, drawing on modern frameworks of health and function, as well as on Ecological Systems Theory and Dynamic Systems Theory, we offer perspectives on contemporary thinking that provide an opportunity to synthesize these ideas. We also suggest new ways to conceptualize and implement intervention services to integrate "development" and "disability" more effectively.
Theme I: Development
A modern definition of development refers to "systematic continuities and changes in an individual that occur between conception and death" (Shaffer, Wood, & Willoughby, 2002). All individuals develop continually in their own way and at their own pace. Consequently, everyone has a unique developmental trajectory and outcome. Historically, however, the definition of development has been somewhat rigid and prescriptive, with assumptions about the nature and timing of normal developmental pathways, and by implication seeing variations of these patterns as evidence of abnormality (Rosenbaum, 2006).
There are many theories about how development emerges throughout childhood. These explain ideas about cognitive, behavioural, biological, and personality development. Traditional theories about development (such as Piaget's theory of cognitive development [Inhelder, Sinclair, & Bovet, 1974], Gesell's Ethological theory [Gesell & Amatruda, 1947], Erikson's psychosocial theory and learning theories ) generally view development as the process that takes place in "normal" individuals. Based on observations of milestones reached in "normal" people, these theories also tend to focus on one type of influence (for example, biological, parental, or environmental factors) resulting in a "right" developmental path. None of these theories explicitly uses disability as a factor to test or illustrate the robustness of the theory by applying it to situations outside the norm.
Learning theorists were among the first to expand their thinking beyond the idea that there is one universally applicable correct path for development. According to Bandura (1992), humans have a few innate processes which are either present at birth or develop shortly thereafter. The emergence of other behaviours is dependent on a number of factors. An individual's state of development is the result of their behaviour, internal events (such as beliefs, expectations, self-perception, goals, intentions, physical structures, sensory and neural systems) and the external environment, including social influences, roles in society and the physical environment (Bandura, 1992).
One element common to these developmental theories is the relatively narrow way they view influences on development. This contrasts sharply with current understanding of development that views a developmental outcome as the product of a seemingly infinite number of processes. These ideas are discussed in more detail below.
Theme II: Disability and its Management
There are many opinions about the best approaches to the treatment of childhood developmental disabilities. Historically, a wide variety of theoretically-based treatment approaches have been proposed. The way professionals and society in general, view disability has been continually evolving. With advances in our understanding of biomedicine, new theories are always emerging, in turn spawning new treatment models that may someday become a standard treatment.
For decades, neurologically-based interventions for children with neurodisabilities have been founded on the idea of disability as a sensorimotor problem. Examples of this type of treatment approach include muscle re-education, Vojta therapy, sensory integration, and the most popular neurological model of treatment for motor disorders, neurodevelopmental treatment. The main objective of these treatment programs (usually implicit rather than stated formally) is to address "impairments" (World Health Organization [WHO], 2002) and hopefully resolve the underlying problem. The common aspect of many of these long-accepted treatment approaches is that they look at a child with a disability as a child with a problem. They assess the child and their difficulties and then try to find ways to improve the outcomes. The traditional focus has been primarily on interventions that address the underlying biomedical impairments.
A recent evolution in thinking has begun to gain currency in the treatment and management of childhood disabilities. This perspective reflects a shift beyond therapies that try to fix the problem, toward approaches that promote activity and participation in a child's daily life activities. This way of thinking is not primarily concerned with ensuring that things be done "normally", but strives instead to enable the child to function to the best of their ability, whatever that ability may look like.
The Integration of Disability and Development
Considering the potential scope for interaction between concepts of "developmental disability" and of "child development", it is surprising how little has been written about their intersection. The works of developmental theorists are particularly disappointing in this regard. None of the prominent theories mentioned above has taken a close look at what happens to development when something goes wrong, or how disability might affect developmental trajectories. Nor have developmental differences been used to test developmental theories. This is a significant gap in the developmental literature, because a developmental theory which could truly be applied universally should have to be able to accommodate those with disabilities.
Intervention strategies generally attempt to do one of two things. Put very simply, they aim either to fix the problem or to encourage function to emerge in spite of the problem. In the literature describing most of the treatment approaches referred to above, there is little mention of the consequences of disability on areas of development other than sensorimotor systems (Rosenbaum, 2009). There is even less mention of how these developmental and functional difficulties might be prevented (Rosenbaum, 2008).
The Next Generation of Concepts
The way we think about disability and development has begun to change. With these changes come new possibilities for approaching the treatment of children with disabilities. These new ideas look at health and development broadly, seeing them as complex webs of interaction rather than as simple chains of timed events. Bronfenbrenner (1992) was perhaps the first developmentalist to characterize development in this way, but he was not alone. Dynamic Systems Theory (Thelen, 1995) has also embraced the idea of multiple factors interacting to create a developmental outcome. In many ways, the WHO's new framework of Health, the International Classification of Functioning, Disability, and Health (ICF; WHO, 2002), mirrors the ideas of Bronfenbrenner and Dynamic Systems Theory, using components of health status as the outcome rather than characteristics of development. These ideas are discussed briefly below.
A: Ecological Systems Theory
The most important contribution to the field of human development from psychologist Urie Bronfenbrenner's writing is his suggestion that it is not one or a few processes that determine how an individual will develop, but rather the interaction of many processes across time and space. Bronfenbrenner's theory emphasizes how a person's biological characteristics interact with environmental forces to shape their development. His idea is that genetic material does not produce finished traits but interacts with environmental experiences to determine developmental outcomes. This way of thinking allows one to recognize that many characteristics that are attributed largely to heritability (such as height) can be impacted by environmental systems (Bronfenbrenner & Ceci, 1994). At the same time, the idea of interaction suggests that similar environmental conditions will lead to different outcomes in different people (Bronfenbrenner, 1992).
Bronfenbrenner does not explain the consequences of specific influences. He does not go so far as to say which influences should be avoided, which influences should be sought out, and which influences are irrelevant for a particular child. This type of information is critical if one wishes to evaluate the impact of a disability on various aspects of a child's development. What he does offer is a model that suggests the possibility that there may be many points of entry when looking to improve the life situation and developmental well-being of an individual with a disability.
B: Dynamic Systems Theory
Analogous to Bronfenbrenner's ideas, Thelen's way of thinking about development understands movement as resulting from the merging of several processes and constraints within both the individual and their environment (Thelen, 1995). A certain motor pattern will be preferred in any given context, because while other movement patterns may be possible, they are less likely to be seen because they are less efficient, or are more difficult to perform. Movement patterns will change over time as the constraints in the person and their environment change. While each individual will find their own unique way of doing things, preferred patterns will be similar, as the environmental and biomechanical constraints are similar. (One might think of the infinite variety of ways professional baseball hitters stand at the plate. There is clearly no one "normal" way to be successful as a batter!)
Dynamic Systems Theory allows one to look at disability in a new light. It suggests that a quest for normality in movement patterns may be inappropriate. If an individual will naturally develop a motor behaviour that works best for them, even if that pattern is associated with disability, should it be inhibited and treated, or accepted as a characteristic of that individual? This way of thinking allows therapists to accept atypical behaviours as appropriate for a specific individual, and to work with their clients to develop any solution to the problem of completing a desired activity that works for that person, even if it is not performed "normally".
C: International Classification of Functioning, Disability and Health
The International Classification of Functioning, Disability and Health (ICF) is a multipurpose framework and classification system developed by the WHO. It recognizes that diagnosis does not automatically translate directly into functional status, prognosis, or level of care and services provided. The ICF is used to describe and measure health, not to give a diagnosis or prognosis (WHO, 2002).
The value of ICF over other ways of describing and evaluating disability and functioning is related to the interconnectedness of the elements. Whereas diagnosis classically depends on "ruling out" competing possibilities, the ICF encourages people to "rule in" relevant elements of an individual's situation. The ICF framework has a number of components (such as, health condition or disease, dimensions of body function and structure, activity at the personal level and participation in society) that interact with each other. This allows for many points of entry when intervening to enhance activity or participation. In addition, the two contextual elements (environmental and personal factors) remind people to recognize the individuality of each person and the uniqueness of their situation, as well as the role of environmental influences on people's lives. Evaluation and modification of environmental factors can be used to narrow the gap between capacity (a person's best abilities) and performance (what they usually do). Consideration of personal factors allows one to tailor interventions that focus on areas of importance to the individual.
In viewing function as the result of interactions between health conditions and personal and environmental contextual factors, the ICF suggests ways to improve all levels of human functioning. One need not focus exclusively on any one component, but rather use as many strategies as are relevant to that situation, particularly when the efficacy of a specific treatment approach is limited. In designing treatment programs with the ICF in mind, one can combine interventions to try to improve many aspects of human functioning, often simultaneously, and thus enhance a person's functional status at all three levels.
Where Do We Go From Here?
In an era of systemic models and frameworks, we believe that there are great opportunities to expand traditional thinking about disability beyond the biomedical dimensions of these conditions. We would argue that it is important to promote function and child development with a wider focus on what is acceptable (beyond 'normal"). We believe that therapists and intervention programs should make a concerted effort to encourage children with disabilities to participate in whatever ways are optimal for them. Such an approach challenges us to move beyond the traditional emphasis on "repair" and "normality" in favour of broader goals that promote function, participation and engagement in life.
There are enormous research opportunities inherent in this emerging approach to our work with children with disabilities and their families. These include assessing the relationships between changes in the biomedical aspects of children's disabilities and the impact of these changes on activity, participation, quality of life and satisfaction with treatments. Much remains to be done both to create therapeutic paradigms built on these current models, and to evaluate the effectiveness of new theories and systems, so that today's new ideas are well supported tomorrow with solid evidence.
This work was originally developed by the first author when she was an undergraduate student pursuing an independent course of study with the second author. She is now working as an Occupational Therapist in the Provincial Outreach Therapy for Children program at the Society for Manitobans with Disabilities.