1 Disability among children: a statistical perspective Howard Meltzer Health and Care Division Office for National Statistics, London, UK Washington Group on Disability Statistics 4th meeting Bangkok, Thailand September 29 – October 1, 2004

2 Definition of children Age (minimum and maximum) Kinship relationships –birth parents –step children –foster children Usual place of residence

3 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.

4 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.

5 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

6 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.

7 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

8 Ethical issues in surveying children Participation of children –capability –confidentiality –privacy Severely disabled children –appropriateness of questions –distress to parents Child abuse Suicidal thoughts

9 Disability among children: a statistical perspective Howard Meltzer Health and Care Division Office for National Statistics, London, UK Washington Group on Disability Statistics 4th meeting Bangkok, Thailand September 29 – October 1, 2004