Functional assessments in the future of NBPP

In the past 30 years there have been significant advances in the field of developmental disabilities. Some of these changes relate to new ways of thinking about chronic conditions in general, and have occurred outside of the field of developmental disability. They include, among many examples, an interest in patient-centered decision-making, such as asking patients to report their outcomes as they experience them (e.g., the PROMIS initiative, led by the NIH) (http://www.nihpromis.org/default.aspx). There has also been a growing focus on variations of the theme of ‘quality of life’ – be it related to health status (so-called ‘health-related quality of life’) or to what many people prefer to refer to as the ‘existential’ dimensions of people’s lives (a judgment about one’s life irrespective of health status) [8]. A third important development has been the World Health Organization’s framework for thinking about health and its impacts – the International Classification of Functioning, Disability and Health (the ICF) [12]. The ICF emphasizes function and people’s ‘participation’, colloquially referred to as ‘engagement in life’, as worthy goals for people to try to achieve. Among the consequences of this mode of thinking is that we have moved beyond the linear expectation that we will mechanically ‘diagnose-treat-fix’ an impairment. We now think more broadly in an attempt to apply our best biomedical knowledge and techniques in the service of helping people to achieve the best functional capacities possible, consistent with the realities of biomedical impairments that still often defy any cure, but can be accommodated. The field of cerebral palsy (CP) has seen a number of developments that have expanded our thinking about patients’ possibilities, and transformed how we counsel and intervene. One example involves the use of powered mobility aids that literally empower even severely motorically compromised young children to become relatively independent in their mobility, with consequential huge impacts on play, social development and language skills [1]. Reliable and valid classification systems have been created to categorize levels of gross motor function [6,7], manual abilities [2], and communication [4]. These, in turn, have allowed people to begin to think about tailoring interventions to address goals that are more accurately focused on achieving particular functional abilities and needs [5]. These developments have, we believe, been helpful to families and children, and also to front-line service providers. These approaches do not appear in any way to have inhibited the continuing search for a fuller understanding of the causal pathways and underlying biomedical impairments associated with CP, or the continual attempts to apply more effective and targeted biomedical interventions. The change that has occurred is, in this writer’s opinion, in the goals that are being identified and addressed. The emphasis on functional achievement and participation, in terms that meet individual and family goals, represents a major step forward.

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