Dr. Iris Elliott:

As overarching remarks, IHREC is clear there needs to be a use of the human rights model of disability in regard to all data. It is important to clarify that although some datasets, such as health datasets, may seem more aligned to a medical model of disability, all datasets can be developed on the basis of a human rights model of disability. There is a wealth of guidance on data collection and use, indicator sets and so on that are aligned to the human rights model of disability. We benefit from the fact the Office of the High Commissioner for Human Rights prepared a report for the Human Rights Council last year in its spring session. I encourage the committee to consider the five areas of data discussed in that paper and I will provide a copy of the full paper to the committee after the meeting. It talks about census and household surveys, including disability-specific surveys. Although IHREC will very much focus on the disaggregation of data, there is a need for aggregated data and we would fully support national disability-specific surveys.

As Deputy Tully has pointed out, this is overdue and it is timely to do that. There are also resource and administrative data and, building on the previous question, disability determination and assessment data. There is also participation and citizen-generated community-based data collection. Those are the five areas the UN would advise signatory states that have ratified the UNCRPD, to consider when they are talking about disability data.

On the use of data, as the chief commissioner has mentioned, IHREC also benefits from the work of the EU’s equality data subgroup and its general equality data guidelines, which include looking at how to rebuild the use of data. Some of that is at the level of greater operational collaboration between institutions but also, very importantly, particularly for disabled people who have had many negative experiences of highly sensitive data being misused, misrepresented, shared without their permission or not deleted in accordance with their requirements, this is about the need to rebuild trust and to work closely with disabled people.

Again, as the chief commissioner pointed out, the UNCRPD is very unusual in its having a whole article on statistics and data. This is a great opportunity, not only for disabled people in Ireland but across the equality groups, to use that as a way of framing human rights and equality-compliant data. There is a great deal of guidance there around intersectionality in data and working with affected identity groups to develop the data. I draw the committee’s attention to the fact that with UNCRPD specifically, there is a requirement on the State to involve disabled people in the development, collection and use of data at all stages but also to make data available and accessible to, and usable by, them.

There is a great opportunity under Article 31 of UNCRPD, and as the chief commissioner has said, I very much welcome the committee’s focus on it because we in IHREC see this not only in our role as the independent monitoring mechanism but also as a national equality body across all equality groups. It is very much a route to improve disaggregated data in the State. As has been referred to by the previous speaker, Article 31 is interpreted across all of the articles in UNCRPD, so it is every economic, social, cultural, civil and political right we need to consider when we are talking about data. There is clearly, therefore, a very significant number of players in the field.

Building on this issue around how disabled people understand their rights under the UNCRPD, interpret them, and advise and engage with State actors, there is also an article on awareness raising which has been very poorly implemented so far. A whole body of work needs to be done around awareness raising, statistics and data in order that disabled people can fully participate in the implementation of it.

Similarly, there are evolving definitions of disability. The UNCRPD quite deliberately does not provide a definition of disability. Given those five group types of disability data, there will be issues around definitions, thresholds, entitlements etc. That is why it is very important to involve disabled people at all stages in respect of datasets being collected.

On the paper to the UN, it is also clear we need to think about individual level data that talks to entitlements but is also about social barrier data. We need to hold both of those complexities.

I welcome the Deputy’s question on the Disability Act and whether it is time to have it reviewed. We are in this situation, as the commission has repeatedly advised members of the Oireachtas and Government, where much disability-relevant core legislation predates the UNCRPD. The commission has a very strong priority on UNCRPD-compliant legislation. We are about to make our submission on the Education for Persons with Special Educational Needs, EPSEN, Act review that is due on the third of next month. At the same time, we make the point that the Disability Act must be reviewed to bring it into compliance with the UNCRPD but also because there is a clear relationship between the Disability Act assessments and the EPSEN assessments.

I also draw attention to the need for UNCRPD compliance and data considerations around legislation that particularly affects people with mental health issues and psychosocial disabilities. We also need to talk about the Mental Health Act and I encourage us, with the opportunity of the current legislation that is passing through the Oireachtas, to think also about UNCRPD compliance and equality data in that context.