1. Measuring the Participation of Families with Disabled Children ESRC User Fellowship Mark Woolley, Family Fund Seraphim Alvanides & Rob Forsyth University of Newcastle

2. Structure  The Family Fund  Background  The project (Aims & Methods)  Benefits to the User Fellow

3. The Family Fund  Independent charity established over 30 years ago in the wake of the Thalidomide crisis – distributes public monies  Provides grants to families with severely disabled children aged up to 16 and living in the UK (46,000 in 2005/06)  Receives in excess of 55,000 applications per year  Holds a database of 172,000 families and 201,000 children  Database growth of around 8,000 families per year.

4. Background  What factors led Applications Officers to award rather than reject a grant application  Was there a way of comparing severity of autism with cerebral palsy given the very different natures of these disabilities  Could the Fund demonstrate the value of its grants in terms of increased levels of participation? The Fund wanted a deeper understanding of its decision making as regards grants:

5. Background  University of Newcastle: work on investigating the environment of children with cerebral palsy had been carried out using an instrument known as ECEQ (European Child Environment Questionnaire). The ECEQ captures the environment across the domains of:  Physical facilities/attributes  Services  Attitudes in the home and wider family  Educational setting  Health setting  Attitudes in the wider community  The Fund commissioned a project with a sample size of 600 to whom the ECEQ was distributed  On analysis it became apparent that different areas of the UK displayed very different ECEQ values although no obvious relationships to indicators of multiple deprivation were found. Hence, the current project.

6. ECEQ scores mapped across the UK Participation is increasingly perceived as being ‘what matters’ about disability. Emphasis placed upon barriers which constitute a ‘process of disablement’ rather than bodily impairments. The teams previous work suggests that both impairment and the ‘support’ aspect of environment are comparably important. Same child in a different environment may experience different levels of participation.

7. ECEQ scores mapped across the UK

8. Research question  Do levels of participation vary according to context – for example the Local Authority area within which a disabled child lives?

9. Methodology  Questionnaire based survey incorporating the Health Utilities Index (HUI) and the ECEQ – 76 questions encompassing health related variables such as vision, hearing, dexterity and mobility and environment questions across the domains of support, physical accessibility of the environment, public transport, educational provision and attitudes of family and friends  Sample of 10,000 children across the UK drawn from the Family Fund database  Creation of average ‘enablement scores’ which can be mapped across the UK allowing for identification of pockets with high or low scores  Comparison of patterns of scores with standard performance data published by Local Authorities

10. Benefits to the User Fellow and the Participants  Time & Training for a Family Fund employee  Update on Research Methodology  Advanced Statistics & GIS training  Time & space for Reading & Reflection  Instil research ethos & build analytical capacity  Potential for further collaboration between the Family Fund and the University of Newcastle  Cutting edge research publications  Possibility for ESRC-CASE application

11. The Team Mark Woolley, User Fellow maw@familyfund.org.uk Seraphim Alvanides, Joint Principal Investigator s.alvanides@newcastle.ac.uk Rob Forsyth, Joint Principal Investigator