Methodological Preparations for an Irish Post Census National Disability Survey in 2006 Paper for Washington Group on Disability Statistics 5 th Meeting Rio de Janeiro, September 2005 Gerry Brady (CSO) and Anne Good (NDA)

Context UN Standard Rules, 1993 Report of the Commission on the Status of People with Disabilities, 1996 NDA Act, 1999

The UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities Rule 13. Information and Research “States should, at regular intervals, collect gender-specific statistics and other information concerning the living conditions of persons with disabilities. Such data collection could be conducted in conjunction with national censuses and household surveys … The data collection should include questions on programmes and services and their use. ”

Strategy for Equality 1996 ‘The Central Statistics Office should carry out a survey of the extent of disabilities in Ireland, and establish a system to ensure that relevant data is regularly updated.’ (Commission on the Status of People with Disabilities, 1996:8)

NDA Act 1999: Research for evidence-based change “..to undertake, commission or collaborate in research projects … “… to assist in the development of statistical information appropropriate for planning, delivery and monitoring of programmes and services for persons with disability

Review 2002: lack of data on disability in Republic of Ireland Statistical Research Mainstream administrative databases Disability Databases: Physical/Sensory Intellectual National Surveys Census QNHS Proposed Irish National Disability Study

Methodological Preparations The NDA Pilot Disability Survey and Consultation Exercise, Census of Population 2002 Census of Population 2006 Post survey micro data linkage to 2006 Census file NDS 2006 sample NDS 2006 questionnaire Ethical practice in disability surveys.

1. The NDA Pilot Disability Survey and Consultation Exercise, Questionnaires developed and tested (ICF framework) Consultations conducted with stakeholders Pilot process reviewed Interviewer guidelines developed NDS recommended to government

2. and 3. Census of Population 2002 Census of Population 2006; Census 2002 First time disability questions included in census, rate 8.3% Census 2006 Disability questions revised and piloted in 2004, rate 10.6%

4. Post survey micro data linkage to 2006 Census file Each person recorded in the Census can be uniquely identified electronically by a combination of four variables: County code; Enumeration area code (EA) D number (taken from the Enumerator Record Book which is a list of all households within an EA including their addresses); and Person number on the census form.

5. NDS 2006 sample: broad issues decided 1.Include children and adults of all ages whether living in private households or in communal establishments. Homeless people will not be covered; 2. The total sample size will be around 15,000 persons. This includes around 2,000 persons who did not report a disability in the Census; 3. The primary sampling unit will be the Electoral Division. These will be selected using the disability results from the 2002 Census of Population. 4. The secondary sampling unit will be a named person 5. The data gathered during the 2006 Census will be used to stratify and select. A higher proportion of younger persons with a disability will be included.

6. NDS 2006 Questionnaire Pilot questionnaires the starting point Another broad consultation exercise, emphasis on government departments Many questions reworded/modified (especially re mental health) More prominence given to built environment and transport Major life areas eg education, employment expanded

7. Ethical practice in disability surveys. Core values to underpin disability research: Respect for the human rights, dignity, equality and diversity; Advancement of social justice for people with disabilities; Promotion of the well-being of those participating, involved in or affected by the research process; Avoidance of harm to those involved in the research process or to the wider community; Facilitation of the participation of people with disabilities in research and research dissemination; Maintenance of the highest professional, legal and ethical standards and competencies; and Comprehension and fulfilment of relevant legal responsibilities.

Conclusions 1. The work undertaken by the NDA in commissioning a pilot disability survey was pivotal 2. The Department of Justice, Equality and Law Reform provided the next major impetus by bringing a Memorandum to Government. 3. The work on disability statistics undertaken by the CSO laid a good foundation for deciding practical issues such as sample selection and methodology. 4. The work of the ICF and the Washington City Group has resulted in more international based consistency in the definition of disability.. 5. There remain unresolved issues around determining a country’s disability prevalence rate. 6. It is hoped to use the PPSN collected in the NDS to examine other administrative databases from a disability perspective..