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This presentation delves into the statistical perspective of disabilities among children, highlighting essential definitions and methodologies for data collection. The focus is on assessing functional limitations, understanding normal development stages, and addressing the unmet needs of children with disabilities. Key topics include the purpose of collecting disability data, ethical considerations in surveying children, and strategies for sampling in national surveys. The discussion underscores the significance of data-driven decision-making in enhancing service provision, resource allocation, and equal opportunities for children with disabilities.
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Disability among children: a statistical perspectiveHoward MeltzerHealth and Care Division Office for National Statistics, London, UKWashington Group on Disability Statistics4th meetingBangkok, ThailandSeptember 29 – October 1, 2004
Definition of children • Age (minimum and maximum) • Kinship relationships • birth parents • step children • foster children • Usual place of residence
Definition of disability for children • Questions addressed to adults are inappropriate (e.g. ADL, behavioural problems) • What is normal for a particular age is an essential part of assessing disability (walking, running, speaking, co-ordination) • General delay versus functional delay: both poorly recognised by parents • Functional limitations, dependence on compensatory mechanisms, specialised services. • Focus on impairments due to the difficulty in • operationalising functional limitations.
ICF for Children and Youth (ICFCY) • Clinical utility of the ICFCY is being tested at the moment. • Participants with access to clinical populations are completing questionnaires for children in four age groups: • 0-2 • 3-6 • 7-12 • 13-18 • These can be used as a framework for developing instruments for epidemiological research.
What is the purpose of collecting disability data for children • Service provision and resource allocation • Unmet need • Less well-developed services for children • 16-17 year olds least well served • Equalisation of opportunity • schooling • employment • Health monitoring of the total population
How are children dealt with in censuses and surveys? • Census • which include all children (from birth) • which include children from a certain age. • Surveys • which ask questions about all household members including children • which ask questions about all household members including children from a certain age. • Separate surveys of children. • Choice of procedure depends on the country’s statistical infrastructure, the resources available for data collection and the political will to make data collection a priority.
Sampling children for national surveys • Sampling school records • Screening the population (enumeration or by mail) • Using centralised records - health or benefits • Piggy-backing on other surveys
Ethical issues in surveying children • Participation of children • capability • confidentiality • privacy • Severely disabled children • appropriateness of questions • distress to parents • Child abuse • Suicidal thoughts
Disability among children: a statistical perspectiveHoward MeltzerHealth and Care Division Office for National Statistics, London, UKWashington Group on Disability Statistics4th meetingBangkok, ThailandSeptember 29 – October 1, 2004