Ms Sin?ad Gibney:

I am joined today by the Irish Human Rights and Equality Commission, IHREC’s, head of policy and research, Dr. Iris Elliott. We welcome this opportunity to speak with the committee again in our role as Ireland’s independent national human rights and equality body and the independent monitoring mechanism for the Convention on the Rights of Persons with Disabilities, CRPD.

Data are an area that we are constantly talking about and raising in our work and we thank the committee for allocating its time to this critical subject. The collection of data relating to people with disabilities is not optional. As a State party to the CRPD, Ireland must, under Article 31, collect appropriate statistical data relating to people with disabilities. This has been prioritised by the UN and emphasised in international law as an obligation to collect and maintain disability data and statistics to facilitate CRPD implementation,

and its monitoring. It is unusual and significant that this obligation is placed in a stand-alone article of international law. Without these data, we are operating in the dark, unable to understand where we are on disability rights, where we are making progress and where we are regressing; nor can we see how changes to legislation, policy, practice and procedures are impacting on people’s lives.

People often get overwhelmed by even the mention of data collection. However, there is a wealth of clear and concise guidance available on the collection and use of equality data, specifically provided by the UN, the EU and the OECD. There is also a clear line established in Article 31, between Article 31 of the CRPD and Article 17 of the sustainable development goals, SDGs. Under Article 31, all progress made by the SDGs must be monitored through disability-disaggregated data. The UN High Commissioner for Human Rights has spoken of the need to ensure mutual reinforcement of the SDGs and the CRPD.

We have multiple data sources available to us today in Ireland, including, census data and household surveys, administrative data and data arising from assessments for certain public services or social welfare. However, what we need is to change the system to disaggregate those data. It is welcome that the strategy of the National Statistics Board, NSB, to 2026 sets out its determination to ensure that disability be incorporated, as far as practicable, into all survey data collection and that disabled and non-disabled analyses of relevant statistics be made readily available.

Data are a public good. Evidence-based policy-making cannot exist without them, meaning policy is often being made without a firm evidential basis. As legislators, members need these disaggregated data to ensure our laws are fit for purpose and serve the interests of the public, equally. As the independent monitor of the CRPD, we need these disaggregated data to hold the State to account for where there is regression with regard to the rights of disabled people and to highlight where it has made progress. Most importantly, as disabled people will tell the committee, they need these disaggregated data to be available in accessible ways to themselves and their organisations in order that they can see whether promises of equality translate into fact. There is such a dearth of disaggregated data at the moment that it makes the exercise of disability-proofing public policy akin to building a house on a giant trampoline.

As a commission, we have sought to strengthen this foundation by acting at EU level as part of the subgroup on equality data, to help all EU member states improve the collection and use of equality data. We are working closely with the Central Statistics Office, CSO, on the equality data strategy and contributing to the work in preparing for census 2027. This year, we will develop guidance for public bodies on data collection to support their obligations under the public sector equality and human rights duty. Under that duty, all public bodies in Ireland have a legal responsibility to promote equality, prevent discrimination and protect the human rights of their employees, customers, service users and those affected by their policies and plans.

Baseline data have been consistently missing. To put this gap into a real-world perspective, this meant that we had a global pandemic, but throughout that time and now in its aftermath, we have virtually no idea of how disabled people have accessed service provision as a result of changes made in that period. As legislators, I ask members to build into legislation, from day one, a requirement to ensure provision and publication of disaggregated data. Those opportunities already exist in legislation currently before these Houses and legislation that is expected. I stress the critical importance of a statutory obligation to collect adequate equality data in future reforms to our equality laws. However, this principle also applies to legislation governing policing, housing, health and other public services which have a direct impact on people’s lives.

Also of relevance to this committee is that any implementation strategy for the CRPD includes a core pillar of data collection. IHREC’s 2022 annual poll showed us that eight in ten Irish people, 83%, agreed that people with disabilities face barriers to participation in Irish life, while nearly nine in ten people, 86%, agreed that employers need to do more to accommodate employees with disabilities. It is clear that too often we are failing disabled people in Ireland. Consistent, clear data collection shines a light on inclusion and exclusion across our society, our workforce, civic and political participation and access to public services. As such, it is essential, if we are to ever work our way out of the dark when it comes to equal participation in Irish life.

Thank you, Chair. I invite the committee to direct questions to Dr. Elliott, primarily, not just because she is in the room with members, but because she is our subject matter expert in this area. I will raise my hand, if I wish to add anything to her contributions.