Ms Jacqui Browne:

The DPO Network is an alliance of 15 national disabled persons' organisations, DPOs, in Ireland. We work together as we have a common interest in the implementation of the UN Convention on the Rights of Persons with Disabilities in Ireland. Today, we will address disability proofing, data collection and the SDGs. I am delighted to be joined by Ms Grace Murphy, who will speak after me about the SDGs, along with Ms Amy Hassett and Nem Kearns.

I will address data collection and disability proofing. Article 31 of the CRPD concerning statistics and data collection calls on state parties to the convention to undertake to collect appropriate information, including statistical and research data, to enable them to formulate, implement and assess CRPD and to develop evidence-based policies. Among other quality controls, it requires the results of any data collection to be provided in accessible formats for disabled people so that it is usable afterwards.

The responsibility for data collection and statistics lies with the State and the inclusion of DPOs in the collection, analyses and dissemination of data is essential and in keeping with the principles of the CRPD. Data collected must take into consideration the social model of disability. This requires a focus on the barriers in society that prevent disabled people's’ full participation in society on an equal basis.

Disabled people must be involved in all stages of data collection, from planning to execution and analysis, including those who may be most marginalised. This requires additional planning, time and expense and we refer the committee to the National Disability Authority’s published guidelines on meaningful engagement with disabled people on how to do this well.

The view of our members is that there is not enough appropriate research currently available to provide the extensive evidence base that is required to develop successful policies and implementation of the CRPD. In line with the National Disability Authority paper on its overview of Article 31, we call on Irish State bodies to expand substantially their qualitative and quantitative data collection and research activities relating to human rights and how they impact on the daily lives of persons with disabilities.

Other areas of concern include the fact that data need to be collected applying a consistent model of disability rights. Currently, a number of agencies and organisations collect data on issues relevant to disability using varying models, for example, based on medical, social or human rights.

It is very difficult to compare data when the analysis base is different. Data collection and the disaggregation of data in the area of disability should include not only information on gender but also on other areas such as ethnic or racial origin, age and other potential characteristics that can lead to discrimination. The CSO has a responsibility to collect meaningful data that can support the implementation of the convention. Our members are keen and willing to engage with it in that regard. Indeed, some members, including the Irish Deaf Society, have made submissions to suggest changes to terminology and questions that would address a lack of clarity in the census that is culturally relevant to deaf people. It is important that disabled people be able to maintain agency or control over their personal data and be supported in accessing, securely sharing and understanding the use, control and deletion of their data.

I am happy to hand over to my colleague, Ms Murphy, who will speak on sustainable development goals.