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Understanding the unmet needs of families with severely disabled children
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External Links: ResearchersAbstract:Background Approaches to study of childhood disability historically were very dominated by two competing models: the so-called “medical” and “social” models. The first emphasises medical diagnoses which are intrinsic to the child e.g. a diagnosis of cerebral palsy, Down’s syndrome or autism. The social model describes disability as a process of disablement arising from a poorly adapted and non-accommodating society where barriers such as physical environments and discriminatory attitudes combine to disadvantage people, disability is therefore viewed as something “done to you” by a discriminatory society. Important qualities of the local context in which a family lives have been identified in previous studies (Mihaylov et al 2004). These include services (their scope, how well they are coordinated and how well they respond to family needs), accessibility of the physical environment, public transport aspects of educational provision, and (previously under-emphasised) local “cultural” attitudes of family, peers and general public to their child’s needs. Extremes of the medical and social models of disability exaggerate respectively the contributions of intrinsic impairment and environment to the disadvantage experienced by disabled people. There are limitations to extreme versions of either model and the important recent International Classification of Function (ICF) produced by the World Health Organisation synthesises the two, achieving a qualitative synthesis of these models. It emphasises that disability arises as a combination of individual impairments, and environmental factors. The main hypothesis that our current research will test is that environment is as important as intrinsic impairment in terms of levels of participation in everyday life; i.e. the very same child in a different environment may well have a very different level of participation. What are the relative importance of intrinsic impairment (the target of medical interventions) and contextual factors (the target of political, social and educational interventions) in determining participation? We hypothesis further that national patterns will emerge in parentally-reported unmet environmental need, some of which may be explained by local policy making. Again, identification of amenable factors that determine high levels of participation may be important for these families if one cannot treat the underlying medical “diagnosis”. Environment is used here in a specific and very broad sense to cover all aspects of the family’s experience of the local world in which they live to include for example services and care from agencies, physical accessibility of local amenities and public transport, and perceived attitudes of family, friends, peers, professionals and general public. Thus, environmental factors include not just attributes of the physical environment, but also societal values as reflected both at the macro level of public legislation and policy, and the micro level of the attitudes. Method The Family Fund holds a national dataset of families with disabled children which will form the basis for this study. A sample of 10,000 families will complete a Health Utilities Index (HUI) survey, a measure of intrinsic impairment which asks about mobility, dexterity, vision and speech etc. These families will also complete a European Child Environment Questionnaire (ECEQ) developed by researchers at the University of Newcastle. The ECEQ assesses participation levels across five domains: Support When combined with geographical locations this will allow us to map participation levels using average ‘enablement scores’ and identify patterns of low and/or high levels of support. These patterns can then be compared with standard Local Authority performance data which will reflect local spending priorities. These combined indicators will be examined in order to identify factors associated with high or low participation levels. Department:The Family Fund Duration:October 2007 to September 2008 Grant Type:User Fellowship PublicationsPresentations
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