The purpose of Appendix 1 is to outline the relevant frameworks and strategies which will inform the development of the Irish Disability Survey (IDS).
Ireland ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2018. The following articles are particularly relevant to the IDS.
Article 1 of the UNCRPD states that
“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”.
Article 31 states that
“Parties undertake to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention”.
In line with the UNCRPD, Ireland has moved away from a medical model of disability towards a social model. This is reflected in the National Human Rights Strategy for Disabled People 2025-2030 which is Ireland’s plan to advance the realisation of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The Strategy is centred around five key pillars identified as priorities by people with disabilities and their representative organisations:
Under the Strategy, there is a commitment to strengthen our capacity for disability research and data to support evidence informed policymaking. One of the key vehicles for this commitment is through the completion of an Irish Disability Survey, post Census 2027, by the Central Statistics Office (CSO).
The National Equality Data Strategy was developed as the framework to support the collection and use of equality data by Government Departments and to develop the necessary standardisation, guidance and capacity building to support this process.
Equality data refers to “any piece of information that is useful for the purposes of describing and analysing the state of equality”.
Data that is analysed and reported by equality grounds, such as disability, can highlight where a particular service user may not be able to adequately access the services we are providing. It also aids us in measuring compliance with our obligations to promote equality and protect human rights in Ireland.
The National Human Rights Strategy for Disabled People commits to a more strategic and coordinated approach to disability research and data, working in line with this National Equality Data Strategy.
It is the intention that the Irish Disability Survey would follow best international practice in terms of survey design and concept. In this regard, key international benchmarks are the International Classification of Functioning, Disability and Health (ICF), and the United Nations Washington Group on Disability Statistics.
The IDS will be informed by the International Classification of Functioning, Disability and Health (ICF), as recommended by DCDE, the NDA, and the wider IDS Steering Group. The ICF is the World Health Organisation’s (WHO) framework for measuring health and disability at both individual and population levels. This framework has been ratified by all WHO member states, including Ireland. The ICF explains disability as an interaction between a person’s impairments (limitation in functioning) and environmental barriers that may limit their participation in society. This is consistent with the social model where the disability is caused by barriers in society rather than the person’s impairment.
In order to examine the impact of such barriers, the population at risk of disability due to societal barriers need to be identified. Otherwise, it would be impossible to tease out how policies and barriers affect the inclusion of disabled people.
This group established by the UN has involved representatives of national statistics offices, relevant international organisations, and DPOs.
By focusing data collection on those who have difficulty in carrying out basic, universal activities, it seeks to identify those who would be at greater risk than the general population of social exclusion if their environment was unaccommodating, for example, those unable to access education or employment.
The UN published a guidance note which provides general advice and guidance on elements of a common understanding of a Human Rights-Based Approach to Data. The guidance note specifically focuses on the issues of data collection and disaggregation. Disaggregation is where data is analysed and broken down by specific variables such as age, gender, or geography.
A preliminary set of main principles, recommendations and good practices are set out under the following headings: participation, data disaggregation, self-identification, transparency, privacy, accountability.