1. The Use of the ICF in Ireland Dr Anne Good (National Disability Authority) PrincipaI Investigator Mhadie Ireland Mr Gerry Brady (Central Statistics Office) Scientific Committee Mhadie Ireland Ms Mary Ann ODonovan (Health Research Board) Scientific Committee Mhadie ireland Mhadie Conference European Parliament 16 September 2008

2. Background Equality legislation and mainstreaming policy Disability Act 2005 National Disability Strategy 2005-2011 Data deficits EU and UN requirements

3. Overview of Irish ICF usage 1.NDS Pilot 2002-2004 (www.nda.ie)www.nda.ie 2.Irish participation in international work (WG and Mhadie) 3.Census 2002 and 2006 (www.cso.ie)www.cso.ie 4.National Disability Survey 2008 (www.cso.ie)www.cso.ie 5.HRB National Physical and Sensory Disability Database MAP project (www.hrb.ie)www.hrb.ie 6.Needs assessment in context of national disability strategy (at planning stage)

4. NDA Pilot 2003 Two questionnaires developed and tested (ICF framework) for adults and children in private households Consultations with stakeholders Pilot process reviewed Interviewer guidelines developed NDS recommended to government, as post censal survey

5. Irish participation in UN and EU activities Representation on UN WG on Disability Statistics 2003 - 2008 Participation in EU Mhadie project 2005- 2008 Contribution to WHO ICF work in Armenia and Georgia 2005

6. Census 2002 and 2006 Census 2002 –First time disability questions included in census, rate 8.3% Census 2006 –Disability questions revised, rate 9.3%

7. National Disability Survey 2006 1.Pilot questionnaires and interviewer guidelines the starting point 2.Questionnaires developed for adults and children in residential settings 3.Post censal survey, sample 17,000 4.Another broad consultation exercise, emphasis on government departments 5.Many questions reworded/modified (especially re mental health) 6.More prominence given to built environment and transport 7.Major life areas eg education, employment expanded

8. National Disability Survey 2008 NDA Pilot 2003NDS 2006 Section 1 Activities and aidsType of disability (includes questions on severity) Section 2 Help from other people Caring and help from other people and attitudes of other people Section 3 Background to reduction Attitudes of other people in activities Section 4 Major life areasTransport Section 5 Demographic informationBuilt environment accessibility

9. National Disability Survey New Sections Section 6 Education Section 7 Work and training Section 8 Social participation Section 9 Sport and exercise Section 10 General and demographic information

10. National Disability Survey Publication Autumn 2008 Important learning from analysis of census no sample –Impact of different interviewers –targeted survey –ICF framework

11. Benefits of using ICF Structure for research Depth Comparability Allows for assessment of coverage of activities and participation Mhadie mapping exercise and item data bank useful for question design

12. NPSDD MAP National Physical and Sensory Disability Database (NPSDD) –2002 National Implementation –Over 27,000 people registered Registration Criteria: –Have a persistent physical and/or sensory disability –Predominant disability is physical/sensory –Less than 66 years of age –Receiving or requiring specialised health and personal social service –Have consented to being on the database

13. NPSDD MAP contd. Measure of Activity and Participation (MAP) –Introduced in 2004 –7,562 people completed section (2007) 3 Sections –Barriers and Challenges –Participation Restriction –WHODAS II MAP Bulletins –www.hrb.iewww.hrb.ie

14. Next steps Reflect on NDS and MAP experience re operationalisation of ICF Develop disability demographic for other surveys eg Garda and Telecoms Work on integration of disability demographic into administrative data collection Plan ICF CY as framework for national needs assessment process for children

15. Learning from Use of ICF in Ireland Importance of ICF training Complexity of operationalising ICF across types of data collection and across cultures Areas of ICF for which are few models Aspects of ICF which may need revisiting Dissonance between ICF model and perceptions of some disabled respondents Need to expand ICF ethical guidelines (NDA guidelines developed)