|Year : 2015 | Volume
| Issue : 1 | Page : 4-8
Developmental disability in the 21 st century: New ideas for a new millennium
Department of Paediatrics, McMaster University Canada Research Chair in Childhood Disability, West Hamilton, Ontario, Canada
|Date of Web Publication||21-Apr-2015|
Professor of Paediatrics, McMaster University Canada Research Chair in Childhood Disability, IAHS Building, Room 408, 1400 Main Street West, Hamilton Ontario L8S 1C7
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Rosenbaum P. Developmental disability in the 21 st century: New ideas for a new millennium. Indian J Cereb Palsy 2015;1:4-8
| Introduction|| |
The purpose of this essay is to share some thoughts and perspectives accumulated over the past 40 years as I have travelled through the Land of Childhood Disability. This is a thought-piece - an expression of personal beliefs and emerging awareness - rather than a scientific report. As such I will refrain from providing references to the things I say, but will add some general citations at the end of the piece. It is my hope to challenge my colleagues to reflect on some of the 'received wisdom' we all acquired in our training, and to encourage everyone to question some of the assumptions we have made about our field. However, rather than simply arguing that we should discard what I believe are many 'old' ideas, I propose to offer some new ways by which we can think about child development, childhood 'disability', the lives of the families raising these children, and our roles as professionals in promoting functioning in the face of impairment. I hope to provoke readers to think about where we have come from, where we might be going, and how we might get there. I will conclude by arguing that there has never been a more exciting time to be working in or studying the field of childhood disability, and that opportunities abound to move the field forward.
| Where Have We Come From?|| |
In considering one's direction forward during any journey, it is always useful to look back at where we have come from. Not only does this remind us of the distance we have already travelled, it also helps us see the features of the landscape that have influenced our thoughts and actions to this point.
- Much of our approach in clinical medicine, including the full range of professionals that are involved in our field, has been built on ways of thinking that derive from acute care clinical experiences. When a condition starts relatively quickly (over hours, days or weeks), we usually expect to make a correct 'diagnosis' as a basis for finding the right 'treatment' to cure, or inhibit, or at least control that condition. We anticipate finding a reasonably clear connection between diagnosis and treatment, and we usually have some experience with expected outcomes of those treatments for those conditions
- 'Rehabilitation' medicine concerns the efforts of professionals and families to help restore functional well- being to a person after an illness or injury has created problems that limit usual function. Based on a combination of the best scientific and clinical experience, coupled with knowledge of the person's previous functional status and their own desired goals for rehab, the directions of intervention are often relatively clear, even if the outcomes are less certain
- In childhood disability, our efforts have traditionally been directed at trying to promote 'normal' function and trying to discourage children from developing bad habits that are considered 'abnormal'
- There has in the past been a sense of pessimism, perhaps even fatalism, about childhood disability ("But what can you do for them?."). Parents have been counseled about what medicine cannot 'fix' and at times have even been encouraged to abandon an impaired infant and simply have another 'healthy' infant.
- The concepts that underlie the World Health Organization's 1980 International Classification of Impairment, Disability and Handicap (ICIDH) provide a guide to past conceptual connections. In this frame of thinking, any disease or condition was associated with 'impairments' in body structures or functions, leading to restrictions in activities that produced 'disabilities', the social consequences of which led to social restrictions that produced 'handicap'. Although this dissection of a condition into its several parts was useful in many ways, the compartmentalization and especially the implication of inevitability of the disorder to produce 'handicap' were rather negative.
| How Might we Rethink Where we Have Come From, and Challenge These Assumptions?|| |
In light of modern ideas about these issues, it is important to reconsider how this inheritance of medical thinking has influenced our thought and action - both what we said, and did, and taught, and what we did not do or consider acceptable.
Another consideration of these realities - an axiom in a way - is that the 'treatments' we offer in the field of chronic conditions like the developmental disabilities are rarely specific and virtually never curative. Most of our approaches are very well-intentioned and address one or more specific elements of the conditions we treat (e. g., managing spasticity in CP) - but even the best management of particular manifestations of a condition does not necessarily lead to improved functioning in the way the person with that condition might hope and expect. In fact, as will be suggested later in this essay, this approach to 'treatment' may distract from the broader goals that 'developmental rehabilitation' should really be about.
- It has become apparent that unlike acute-care medicine, in chronic conditions (particularly those requiring 'rehab') there is rarely a clear diagnosis or a direct path and connection to treatment. In fact when people have chronic conditions there is often a multiplicity of issues that creates 'complexity ', and for which the specific approaches to 'treatment' and management may not be apparent. Furthermore, it can often be difficult to find and formulate a specific clear 'diagnosis'. This is especially true in childhood disabilities, where we often assume, for example, that 'cerebral palsy' or 'autism spectrum disorder ' describes a specific diagnosis. In reality these labels, and so many others in developmental medicine, are names given to categories of impairments that have certain clinical features in common but which can vary enormously in their underlying causes and the ways they manifest in children's development and function and the impact these conditions have on children's (and families') lives.
- The concept of Rehabilitation makes sense for people who have lost function and for whom interventions are aimed at restoring those abilities as well as possible. However, in developmental impairments of childhood this idea - in which we have all been trained for the past 50 years or more - really doesn't make sense! Young children have not yet had time to develop their capacities, or to show us who they are and who they want to be. Rather, they are at the beginning of their journey into life, and almost certainly require that we think about, and strive to enhance, their processes of 'being, belonging and becoming' based on a quite different set of ideas about child and family development. For this reason, as discussed below, we need to put a major emphasis on child development
- The concept of 'normal' is another notion worth reconsidering. What is 'normal' anyway? Think of left- handedness, which characterizes 15−20% of the population. There was a time when children were forced to switch from using their left hand to trying to use their right, and left-handed people were considered 'sinister' (from the Latin word for 'left')! In today's world, we are far more tolerant of this 'difference' or 'variation', reflecting, I believe, that there is almost always more than one way to do things, and no one way is invariably correct or 'normal'. Thus, I contend that our approach to promoting child development in the face of impairments has traditionally been too strict and severe, assuming that there were right and wrong ways to do things rather than different but acceptable and functional ways
- Our sense of pessimism has been based in large part on these traditional notions of what rehabilitation of children could and could not accomplish. We also have believed we could read the book by the cover - what I believe is an arrogant and inappropriate way to think and act. By our pessimistic prognostications, we may have encouraged families to achieve self-fulfilling prophecies, based on our (often very misguided) belief that we could read a child's future functional status from their early developmental issues. Insofar as 'normal' was rarely achievable, people too easily assumed that nothing could be done and that a child's fate was sealed from early life. With an expanded recognition of how variably and creatively people can accomplish the things they want to do (think of people's achievements at the Paralympics!) and a widened range of expectations of people to succeed on their own terms, we now know that this blanket pessimism was inappropriate and misplaced.
| Where are we Now, and where Might we be Going?|| |
In 2001 the WHO revised its original ICIDH to create the International Classification of Functioning, Disability and Health (known familiarly as the ICF). This framework for health addresses several of the concerns raised by critics and commentators of the ICIDH, as is evident in [Figure 1]. The ICF framework represents a huge leap forward from the ICIDH in several ways. First, the language used is neutral rather than negative - 'impairment' is replaced by 'body structure and function'; 'disability ' is now referred to as 'activity' (with the possibly of activity restriction); and 'handicap' becomes 'participation' (with a risk of participation restriction). Second, the ICF recognizes the roles of 'contextual' factors that can and do influence health, including 'environment' and 'personal factors' as components of everyone's life. Third, and in many ways most important, the elements of the framework are all interlinked into a 'dynamic system' of elements, change in any one of which is likely to have impacts on the others. In other words this is a modern and importantly updated approach to the issues with which ICIDH was originally concerned. Finally, the ICF framework provides a strengths-based way to 'rule in' relevant aspects of the life and functional issues of a child and family in ways that allow us both to see the larger picture - beyond the 'diagnosis' - and to identify possible avenues for intervention. In many ways using ICF thinking is entirely opposite to an approach that encourages finding a diagnosis (when that may be elusive) and bemoaning the absence of specific treatments.
|Figure 1: The International Classification of Functioning Health and Disability 2001|
Click here to view
One approach that our research group has taken to recalibrate and refocus the language we use in discussing childhood disability was to identify a series of "F-words" that can be situated within the elements of the ICF framework; these can serve to remind us of the areas of focus to which we should be attentive in our work with children with impairments and their families. As shown in [Figure 2], these words are 'Functioning' (what 'activity' is about); 'Family' (the essential 'environment' for all children); 'Fitness' (in disability, an often-neglected aspect of 'body structure and function'); 'Fun' (an essential 'personal factor'); and 'Friends' (needed for full 'participation' in life). The ICF provides a point-in-time perspective on a person's status, so we have added the word 'Future' to remind us that children with impairments grow up and become adults with those impairments, and that part of our work with children with impairments and their families needs to be directed toward the adult lives these young people will one day experience.
Since these ideas were presented in the autumn of 2011, and published in mid-2012, many people have responded well to them. Parents in particular have been excited with what they see as a positive and hopeful orientation to promoting function in their children with impairments 'despite' the likelihood that their children may experience their lives and their accomplishments in a way that is different from 'typical'. As a result of the enthusiasm that these ideas have generated CanChild, in collaboration with some parent consultants, is now embarking on a program of research to study these notions in action.
Needless to say, even apparently good ideas are only as good as the evidence that they 'work' - so the next several years will be involved with studying whether aggregation of these ideas actually makes a difference for families and professionals who buy into them. We plan to package these ideas in plain language and to implement them systematically with families. We are especially interested to evaluate the extent to which adoption on a 'F-words' approach to raising their child might have impacts on parental understanding of conditions like CP, on parental well-being and sense of control and empowerment, and the extent to which professionals can adopt these ideas and work with parents in ways that are 'family-centered'.
Another concept that we believe should inform our approach to our work with children with developmental impairments in the 21 st century is a major emphasis on child development. Virtually all the so-called 'disabilities' of childhood have a neurological basis, and the brain is the primary organ of development. In fact people increasingly refer to these conditions as 'developmental disabilities' to reflect our awareness that all of them - CP, intellectual disability, autism spectrum disorders, and many more - do, or are likely to, influence the patterns and trajectories of the lives of the children who have them, and of their families.
It was noted earlier that many of our impairment-based 'treatments' may lead to changes in body structure or function without accompanying changes in activity or participation. There is also, in some traditional schools of thought, an imperative to try to promote 'normal' function' and inhibit or prevent children from doing things in ways that are considered 'abnormal'. An example would be the discomfort of some professionals with 'allowing' children with spastic diplegic CP to W-sit or to walk with what is considered to be an 'abnormal' gait - crouched at hips and knees, up on the toes, and in-toeing. The 'developmental' counterargument is that, to the extent that these postural and gait patterns enable children to be stable, to be active, to explore, to learn about themselves and their world, to get into what adults call 'mischief', even these apparently disordered postures and gait patterns serve an essential and irreplaceable function in promoting a child's development - and as such should be celebrated. We believe that there will be time - once a skill like walking is acquired - to help improve the quality of the skill if and when the child is interested to try to do so.
Thus, a primary focus of modern thinking and action should be to promote child development, without regard to whether things are done well, or 'nicely', or 'normally'. As with all aspects of typical children's development, things are in a constant state of flux and change, so that being able to do something - however it is done - should trump other considerations when children are young. Development begets further development, and empowering children to acquire and practice new skills should be our primary goal in developmental intervention.
Another perspective that is worth considering is that our traditional approaches to developmental intervention, applying ideas from adult care and rehabilitation, are likely naοve. The child's brain, and thus their readiness to learn, is fundamentally different from the ways that adults learn. Think, for example, of an adult trying to acquire a new language. We will use any of a host of cognitive strategies - mnemonics, memorization, sound patterns, application of rules about prefixes and suffixes, etc., - whereas children 'simply' absorb language 'naturally'. Of course this is not 'simple' at all! This kind of learning is possible because the child's brain structures and receptivity are fundamentally different from the brain structure and function of the adult brain. Hence, what often works for adults may be inappropriate for children - and, more importantly, failing to take account of the learning capacity of the young brain may be a serious omission on our part!
| Summary|| |
In this thought-piece I have argued that, with the best of intentions, our work in developmental disability has been influenced by forces and concepts imported from acute care thinking and from adult rehabilitation medicine. I have suggested that there are serious limitations to these models of thinking and action as they concern childhood disabilities. On the other hand, I firmly believe that we should be relying on the new WHO ICF framework as a guide to thought and action; that we should promote a major emphasis on child development and achievement without regard to 'quality' in the course of early development; and that we should adopt a strengths-based frame of mind in our work with children with impairments and their families.
The challenges for all of us include applying these and other ideas critically and analytically, and study everything we do carefully so we do not simply replace one orthodoxy with another, but rather advance the science and service of developmental disability!
| Further Readings|| |
- Ronen GM, Rosenbaum PL. Concepts and perspectives of 'health' and 'outcomes' in young people with neurological and developmental conditions. Ch. 2. In: Ronen GM, Rosenbaum PL, editors. Life quality outcomes in children and young people with neurological and developmental conditions: Concepts, evidence and practice. Clinics in Developmental Medicine No. 196. London: Mac Keith Press; 2013.
- Rosenbaum PL. Cerebral palsy in the 21 st century: Is there anything left to say? Neuropediatrics 2009;40:56-60.
- Rosenbaum PL, Gorter JW. The 'F-Words' in childhood disability: Is wear this is how we should think! Child Care Health Dev 2012;38:457-63.
- Rosenbaum PL, Ronen GM. A developmental perspective on childhood neurological conditions. Ch. 6. In: Ronen GM, Rosenbaum PL, editors. Life quality outcomes in children and young people with neurological and developmental conditions: Concepts, evidence and practice. Clinics in Developmental Medicine No. 196. London: Mac Keith Press; 2013.
- Rosenbaum PL, Rosenbloom L. Cerebral palsy: From diagnosis to adult life. London: Mac Keith Press. Org; 2012.
[Figure 1], [Figure 2]