Joint Committee on Disability Matters debate -
Thursday, 16 Feb 2023

Disability Proofing and Data: Discussion

Chairman

The purpose of this meeting is to discuss disability proofing and data. On behalf of the committee, I welcome Mr. Cormac Halpin; Mr. Kieran Culhane; Ms Fiona O’Riordan; Ms Jacqui Browne; Ms Grace Murphy; Ms Amy Hassett; Nem Kearns; Ms Sinéad Gibney and Dr. Iris Elliott.

Before we begin the meeting, I have to go through the formalities. Witnesses are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against any person or entity in such a way as to make him or her identifiable or engage in any speech that may be regarded as damaging to the good name of a person or entity. Therefore, if their statements are potentially defamatory, they may be directed to discontinue their remarks. It is imperative they comply with any such directions.

Members are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against any persons outside the Houses or an official by name in such a way as to make him or her identifiable. Members can contribute online as long as they are within the precincts of the Leinster House complex.

I call on Ms Gibney to make her opening remarks.

Ms Sinéad 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.

Mr. Cormac Halpin

I thank the committee for the invitation to the CSO to attend the committee meeting to consider disability proofing and data. I pass on the apologies of the director general, Mr. Pádraig Dalton, who could not attend today because of a pre-existing work commitment abroad. I am senior statistician for census outputs and am joined today by my colleagues, Mr. Kieran Culhane, senior statistician in charge of the statistical system co-ordination division and by Ms Fiona O’Riordan, senior statistician with responsibility for social data collection in the CSO.

As Ireland’s national statistical institute, the CSO is an independent office under the Statistics Act 1993 and provides independent statistical information to support and promote understanding and debate across Government, business and society. Data are a modern-day natural resource and the CSO’s role is to extract value from those data. Official statistics are a public good and an essential input to creating an informed society for the people of Ireland. Increasingly, the CSO is providing a suite of data and statistical services to the broader civil and public service. This move towards a cross-organisational, co-ordinator role across the entire civil and public service is mandated in both the European regulation on statistics and in the Statistics Act 1993. There is an ever-increasing demand for our products, data and services from across the civil and public service, as organisations work to extract the insights and evidence within data to inform policy development.

Disability statistics provide a wealth of information about the lives and experiences of people living with a disability, ranging from impairment, difficulties in undertaking and participating in activities, as well as the barriers they face in their lives. Statistics on disability are highly relevant, from a fundamental rights perspective. To meet national user needs in this area, the CSO uses data from both administrative sources and statistical surveys to compile a range of outputs disaggregated by disability related characteristics.

Results are disseminated in a highly accessible manner through a range of channels, including statistical reports and research microdata files.

The CSO’s census of population is our largest primary data collection activity reaching every household in the State with the delivery and collection of more than 1.9 million forms to households and communal establishments in 2022. The production of results for census 2022 is expected to commence in May and we are committed to producing a wide range of statistical tables generated from the data on disability. These tables will be available for all users on the CSO’s Px-Stat database tool on the office’s website, www.cso.ie.

Over 50 detailed tables relating to disability were produced from census 2016 and at least this number will be produced from census 2022. These tables will be supported by a dedicated thematic publication on disability that will interpret the data and provide clear visualisations and maps to assist users in understanding the results and trends in the data. The CSO will also continue to provide a service to users to produce bespoke statistical tables on disability as well as assistance in navigating the online statistical tools so users can fully exploit the wide range of data that will be available.

These tables are possible because of the inclusion of two questions dedicated to disability and related difficulties on the census questionnaire. These questions were first included in 2002 and their framing has evolved over time in consultation with key stakeholders. The questions were expanded for census 2022 following detailed discussions with a dedicated subgroup of stakeholders during the public consultation on questionnaire content. This facilitated the capture of additional data relating to disability in response to stakeholder requirements. These requirements included the incorporation of the recommendations of the Washington Group on framing questions relating to the compilation of statistics on disability while also retaining as much comparability as possible with previous census questions on disability. The range of detailed statistics relating to disability produced from the Irish census is unparalleled within the EU.

The CSO has started the preparatory work for the next census which will take place in 2027. The public consultation on the questions to be included in census 2027 was launched late last year and the CSO is currently preparing to appoint a census advisory group of subject matter experts to advise on potential changes to the set of census questions. The National Disability Authority, NDA, has been part of the census advisory group since 2004. As part of the consultation, multiple submissions were made relating to the questions on disability and these will be considered by the census advisory group with a view to ensuring the census 2027 questionnaire is as representative as possible of the data requirements of census users.

The CSO is also putting the citizen at the centre of the design planning for census 2027. Meetings have been held with organisations representing persons with a disability and these will continue during the process of developing the next census, which will have an online response option as well as a paper option. These groups have included representatives of persons with visual impairment, the deaf community and the deaf-blind community. The CSO plans to engage the expertise of these and other groups in enhancing the accessibility of census 2027 for all citizens.

A proof of concept for the online platform took place in September 2022 and the platform was assessed from an accessibility perspective by Inclusion & Accessibility Labs. Relevant courses are also being provided to CSO staff. The census 2027 website will be designed in line with web content accessibility guidelines, WCAG 2.2 AA, and, if there are future guidelines, these will be adhered to. Supports will also be available to the public on the website, through help desks and field staff.

I will now turn now to some of the other CSO activities in relation to the provision of data on disabilities. Social surveys in CSO include disability questions on every survey. The integrated European social survey, IESS, regulation provides the legislative basis for social surveys - a labour force survey, the survey of income and living conditions, the European health survey and an adult education survey - and includes an agreed set of disability questions that are asked in each of these surveys. The regulation requires that these questions are included every two years.

The European health information survey, a regulatory survey carried out in 2019, has published several tables around disability. The sexual violence survey, which will be published on 30 March, will also include a chapter on disability. The data collected in these social surveys are available on request in an anonymised aggregate format for researchers or other bodies and the CSO deals with many ad hoc queries on disability.

The CSO has published releases in respect of 15 of the 17 interconnected UN sustainable development goals, SDGs, including on good health and well-being, gender equality and reduced inequalities. The CSO, Ordnance Survey Ireland and the Environment Systems Research Institute have created a new website called Ireland's SDGs data hub, which is Ireland’s central portal for all SDGs and contains indicators data on the 17 UN SDGs for Ireland. The site facilitates the reporting on how Ireland is progressing towards meeting the 17 UN SDGs.

In addition, the CSO sits on several interdepartmental groups related to equality data matters, including data related to disability. We work closely with the expert advisory group on equality budgeting, have completed and published an equality data audit of the Irish public sector in 2020 and are currently supporting the development of a national equality data strategy with the Department of Children, Equality, Disability, Integration and Youth.

The CSO publishes pathfinder projects that are policy-relevant research projects that bring together data from CSO and administrative sources. These include research projects related to many topics, including disability. In 2021, for example, the report, Income, Employment and Welfare Analysis of People with a Disability 2019, was released. This report looked at individuals who reported a disability on census night 2016 and linked them to pseudonymised administrative data sources, including employment data from the Revenue Commissioners, welfare data from the Department of Social Protection, education data from the Department of Education and the Higher Education Authority, social housing data from the Department of Housing, Local Government and Heritage and health support data from the HSE, to provide new insights into the employment, income, education, health and housing outcomes for people with a disability.

The joint committee’s pre-budget submission recommended further disaggregation of the survey on income and living conditions, SILC. The structure and methodology for the SILC is determined at European level to ensure international comparability and the sample size does not lend itself to the breakdown proposed. More importantly, it is not the appropriate instrument for the collection and compilation of data on disability at subnational level. The Irish census, as mentioned, provides detailed statistics relating to disability every five years. A dedicated thematic publication on disability entitled, Census 22 Profile 4 release - Disability, Health and Carers, is scheduled for publication on 28 September.

To conclude, the CSO is no longer an organisation that simply provides data and statistics. We provide evidence and insight to policymakers and citizens. The CSO vision is independent insight for all. We see our role as one that ensures the people of Ireland live in an informed society and our outputs and services are viewed as a public good. We will continue to listen to the needs of policymakers and other stakeholders in the area of disability statistics and continue to compile statistics from a mix of primary and secondary sources to meet these needs. We are happy to take any questions the committee may have.

Chairman

I invite Ms Browne to make her opening statement.

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.

Ms Grace Murphy

Ireland adopted the 2030 SDG agenda in 2015. At its heart are 17 goals that seek to ensure that the basic needs of all human beings of all nations are met. We should be able to assume that no person in Ireland, one of the richest countries in the world, would be left hungry, cold or without necessary medical treatment, but that is not the case. Disabled people and their children are a part of Irish society that is most exposed to consistent poverty. The cost-of-living crisis has left many at breaking point. No person, disabled or otherwise, should be afraid to turn on the heating, unable to buy food to eat or left waiting on a hospital trolley for days, yet those have become everyday scenarios throughout the country.

Beyond basic need, the SDGs are about planning for a better future, a better society and a better world through sustainable and climate-responsible change. Sustainability is all about planning, and it is fair to say that disabled people are, of necessity, masters at planning as we have to navigate a world that was not designed with us in mind. Sustainability in Ireland means collective organising to ensure the ongoing well-being of everyone who lives here. I would like to see these principles brought to bear in planning disability services for us and for future generations. There will be disabled children born this year and every other year, but where is the planning for timely assessments for them, early intervention, care supports and income supports for families? Crucially, where is the long-term plan for personal assistance services, accessible housing and transport schemes and other supports needed for those children to achieve independence, access employment and participate in society as full and equal citizens with lives of autonomy and dignity?

The SDGs are meant to guide us in creating the kind of world in which we all want to live. To create it, we need a plan created in collaboration with disabled people that understands and embeds our inclusion in its every aspect. The Department leading the implementation of the SDGs must work closely with the Department of Children, Equality, Disability, Integration and Youth to create a disability-specific roadmap that ensures disabled people are no longer forgotten in the implementation of the SDGs and must introduce impact assessments for all strategies likely to affect disabled people. Disabled persons organisations must be consulted in close partnership in identifying the challenges, opportunities and priorities for these strategies. Every human being who lives long enough will probably be disabled someday, so it is in everyone’s interest that politicians such as the committee members remember our needs when making policies for all our futures.

Senator Mary Seery Kearney

I thank all our contributors this morning. I read their opening statements with great interest through the filter of the publication this week by the committee on children of its report on assessments of need. I constantly query how many of the gaps here relate to the data that were available in planning. That planning needs to go back to subjects taken in secondary school, options for college, the number of places in college and the appropriateness of college courses, and then move on to employment and the provision of services. The data need to be many years ahead of provision in order to meet what is required. It is important to gather information on who is born and where as quickly as possible post birth, or even before birth.

That leads me to the issue of thresholds. In terms of whether people include themselves in questions, are the thresholds sufficiently refined? I refer to questions Nos. 15 and 16 in the most recent census. I wonder how many people included themselves in the physical activity question or, alternatively, did not consider it relevant to them or wish to explain themselves in terms of age or unfitness. There are a number of things that worry me in this regard. Even when seek more qualitative data, how do we get it? I have reached the age I am but nobody has ever surveyed me, or anyone I know, in the context of anything like that. Of whom are the questions being asked? How do we know they are appropriately including or excluding themselves? In the context of disaggregation, how do we know we are asking the right question? That may be rudimentary to everybody else here. I am in awe of some of the questions asked by my colleagues on this committee. It comes down to the fundamental issue of how we move from quantitative data. There are issues even in the context of quantitative data. Each year, there are many people who apply for disability benefits but are refused, for example. They believe they should be included but they are not. If we are relying on those statistics, then the Department of Social Protection is missing people who believe they should be included. I am thinking of people who are amputees but who, as they have only had one limb amputated, do not meet that medical certificate threshold and consequently are excluded from a heap of benefits. I know one such individual who has never received any support from the State.

I fear we are not asking the right questions and we are not delving deep enough. I have concerns in respect of the lack of planning due to the absence of information. How do we overcome that? In the context of the HSE, despite all the movements, it still often seems to be entrenched in a medical model. How does that influence the social and other needs people have in order to live ordinary lives? My apologies; it is beginning to become a soapbox. I will hand over to our guests.

Mr. Cormac Halpin

I will respond to the Senator's points on the census questions. The principle in how most census questions are designed is that the CSO engages with the users. As regards questions Nos. 15 and 16 on the most recent census form to which the Senator referred, the process is that the CSO appoints a census advisory group, which is a representative group of subject matter experts across the board. As I mentioned in my opening statement, the National Disability Authority, NDA, and our colleagues in IHREC were part of that census advisory group in 2016. In 2016, the group decided to appoint a sub-group to look at the disability questions in particular. There was a number of subject matter experts on that group. Like every census question, there is a balance to be struck between meeting user needs and making sure the questions are understandable and comprehensible. One cannot put overly complex questions on a census form because we know from experience that if one does so, the questions will not be well answered and, ultimately, the data will suffer. There is another tension whereby if one changes a census question too much from one census to another, one compromises the comparability of the data. These are the kind of discussions that were had at the disability sub-group the last time around.

The CSO views itself as the custodian of the census, not the owner. The census questions are owned by the users of that data. The CSO is reliant on key stakeholders and subject matter experts in, for example, the area of disability. We are guided by their needs. They are the ones that use and need the data. Our key concern in these discussions is to maintain the statistical integrity of the census and make sure the questions are as comprehensible and useful as possible to produce good quality data.

For the consultation leading into the last census, the questions were changed significantly in response to user requirements during that subgroup. The Washington Group framing of census questions was integrated into the questions to a great extent. It was not to a full extent because the users also wanted to maintain as much comparability with census 2016 as possible. That is a little bit of the tension I mentioned. Ultimately, the subgroup on disability signed off on the framing of the questions. There were changes to some of the wording of the categories and the instruction in question 16 to include issues due to old age. Those proposals were brought back to the plenary census advisory group, which approved the subgroup's recommendations. Ultimately, that was approved by Government in 2019 ahead of the census.

That is how it works. The CSO does not come into these discussions with any agenda, but tries to meet the users’ needs as much as possible subject to those constraints and other broader constraints, such as space. From a statistician’s perspective, we would love to have hundreds of questions on the census form, but we have a responsibility to the public to minimise the response burden. If there are too many questions on the form, the response rate tends to suffer. It is about trying to meet all needs and balance them to the greatest extent possible. We delivered those questions, which are a significant change. We have fully processed the census now and are ready to produce the results starting from May. We think there will be good, interesting data from that. A big benefit of the census is we can disaggregate the data down to small area level, which is neighbourhood statistics down to around 100 households, so it is down to a housing estate, townland or street. We meet the requirement for disaggregation to a great extent.

On potential changes to the questions for 2027, the same process will apply. A census advisory group will be appointed. I will not create any hostages to fortune by stating whether there will be a disability subgroup appointed. That will be the decision of the census advisory group when it meets. We anticipate the first meeting will be in June. That subgroup will contemplate the questions, if it is formed, and decide whether questions posed in 2022 are appropriate. The CSO will be reliant on guidance from the users of the data and people who rely on the data to help us frame the questions if there are to be changes. The CSO has no skin in the game other than ensuring statistical integrity and that the questions are suitable for a census. The process is driven by the users. It is unlikely that there will be a diminution in the number of disability questions. They are extremely important questions, which is reflected in the fact there is a dedicated publication coming out on disability. There are other parts of the census form where there is not a dedicated publication, which other users may have an opinion on.

Ms Amy Hassett

The question of how people know how to identify themselves as disabled is a difficult and complex one, and one we spend much time in Disabled Ireland and the DPO Network talking about. There can be a significant barrier to people feeling comfortable in identifying as disabled. I could talk for 15 minutes about why that is the case, about the barriers, stereotypes, attitudes and about the need for a change in public perception around disability and not necessarily framing it as an inherently negative thing. That fits into the bigger picture of why it can be difficult for people to describe themselves as disabled or identify themselves as having difficulties in various areas. Disability-proofing and the SDGs are part of the same soup. It all fits together. We cannot tackle one without tackling other aspects.

We had problems with the most recent census in that it did not necessarily capture autistic individuals. We have no idea how many wheelchair users are in the country. We are looking forward to the census results coming out, but there will still be limitations to how we can use the data effectively in our advocacy. This issue is by no means sorted. We have to make sure in the future that data is produced in a way that is accessible to various individuals. That was an issue we had with the last census.

Ensuring the data is accessible and coupling it with awareness-raising and a changing public perception of disability will be an important part of capturing disabled people and creating a situation where people are comfortable identifying as disabled. The numbers will be under-represented. The true number of disabled people in the country will not be reflected in the census. That will always be the case and is a change we are seeing over time. We have to push on all sides in order to make it more accurate and more reflective of the population.

Ms Jacqui Browne

Senator Seery Kearney's questions were really good. We have to be clear about differences when we try to define disability. Having a catch-all definition of “disability” will not work.

Reference was made to people not qualifying for schemes, grants or benefits. Those are based on what are known generally as qualifying criteria. Those need to be reviewed but that is different from trying to estimate and disaggregate the entire population of disabled people. If we are trying to do that, we have to start with a human rights approach to disability and a social model of understanding. If we accept that as our premise, then to understand and capture, as Ms Hassett explained well, as many people as possible in a census, we need to identify the 20 or 30 barriers facing the broad church of disabled people. As Ms Hassett and others have said, the population of disabled people is hugely diverse.

I appreciate the challenge the CSO faces in trying to develop appropriate questions. I worked with it many years ago on the national disability survey study. Maybe it is time for a discrete national disability survey following the report of this census. It would be timely in the context of implementing the convention in Ireland and of the development and implementation of the SDGs before 2030. That could be thrown out there for consideration.

The Senator referred to the assessment of need. We all know that the assessment of need provided for in the Disability Act is, in itself, wholly inappropriate and does not do anything for the rights of disabled people. All it does is identify needs; it does not establish rights to any services required based on that assessment.

Senator Mary Seery Kearney

I could not agree more.

Nem Kearns

Most of my comments have been covered but I will touch on a couple of points. The Irish figure for disability in our census data is 13.5%, which is far below the EU average. In Northern Ireland, it is 21.7%, and it is difficult to see any significant social factors to account for that difference, except for gaps in data collection.

Disabled Women Ireland held a series of consultations on the UNCRPD to inform the DPO Network shadow report. In the weeks coming up to it, our inbox and my phone were blown up by people calling because, due to the language we used to invite participants, they had registered and then panicked because they did not know if they were allowed to identify or if they counted as disabled. Every person I spoke to did count, but none would have filled out the census or be captured in any other system as disabled because the definitions used did not reflect their lives and because of the confusion we have socially in the context of what counts and does not count as disabled.

I have a lifelong disability that no longer counts as such under any Irish regulations after the age of 18. Moreover, although I am disabled in six ways, I have never qualified for any State support. We are missing crucial data. We have to address this both ways, taking account of the factors Ms Hassett was speaking to and the general misconception and lack of understanding, even among disabled people, of who counts and whom we are counting.

I am delighted to hear the CSO will adapt the web accessibility to make its data, and I hope also the statistics gathered from the census, accessible. It would be great to clarify whether that will be retrospective in any way. The 2011 census results are accessible to screen reader users, but the 2016 results are not. People working in our organisation who use screen readers cannot access those data or do their jobs, so it would be great to make the data from at least the last couple of censuses accessible in order that we can track trends over time and compare data in our work.

Deputy Pauline Tully

I welcome our guests. A census is carried out every five years. Significant resources go into the census. The purpose is to plan for the future. The CSO has a great deal of comprehensive information and breaks it down. More needs to be done in respect of disability and disaggregating the information in that regard, but I do not feel as though the information is used as it should be. If it were, would there be a housing crisis and a health crisis? Should these data not indicate that our population is increasing and that there will be a requirement for more housing? There is a housing crisis, but there is also an ongoing crisis for disabled people in the context of housing within that crisis, and that has been the case for a lot longer than the current general housing crisis. Our guests from the CSO stated there are increasing demands from Departments and offices to work with them on the information, but is it being resourced to do that? Obviously, if there are increasing demands, there will be a need for increased resources.

One criticism of the most recent census related to the fact there were no autistim-specific questions. Is that something the CSO is going to address in the 2027 census? In doing so, is it consulting autistic people or their DPOs on expanding those questions? There was a mention earlier of holding another national disability survey, and perhaps it is time for that. The previous one was in 2006, which far predates the UNCRPD. How would we identify people to participate in that? It is an important question.

The Disability Act was mentioned. There are increasing calls for it to be reviewed, especially given the Education for Persons with Special Educational Needs Act is being reviewed and the two should go hand in hand. Dr. Elliott, Ms Gibney or one of the members of the DPO Network might comment on where that is going and whether it is going to happen. Unfortunately, an indication has come from the Government that there is no intention of doing this, but it is vital.

Do our guests from the DPO Network have any examples of meaningful consultation that it or other DPOs are involved in with any Departments or organisations? A document, How to Conduct a Disability Impact Assessment, offers guidance to Departments. Do they use it? I find many Departments work in silos and do not consult sufficiently with disabled people or their representative organisations, namely, DPOs. There are a lot of data across a number of areas, including data on gender and sexual-based violence and its impact on disabled women, data on access to health screening and data on the number of prisoners who have intellectual disability or autism, but there are many areas there where we do not have the significant data we should have to plan for the future and make life better for all the people involved.

Mr. Cormac Halpin

A number of issues relating to the CSO were raised. I will attempt to address them insofar as I can. As for a category on autism as part of the disability question, in regard to the public consultation for the 2027 census, a number of submissions have been made about both autism and wheelchair use, although I cannot pre-empt what is going to happen there. It is not a CSO decision but a decision of the census advisory group. Those proposals have been received as part of the consultation, so they will be discussed by the census advisory group. If a disability subgroup is proposed, I would expect that both those submissions will be discussed by the subject matter experts to come to a recommendation to put to the plenary census advisory group. The autism question, in particular, was discussed in previous census consultations and consideration was given to creating specific categories for both autism spectrum disorder and Down's syndrome, but the census advisory group for previous censuses did not consider it feasible to list individual disabilities on the census form. Instead, the broader categories of an intellectual disability and a difficulty with learning, remembering and concentrating were created. Nevertheless, as I said, they will be discussed as part of the upcoming census advisory group.

On the disability survey, the CSO is happy to engage with all users and stakeholders, including on this issue, and any decision will be subject to the usual issues such as constraints relating to resourcing and funding. We will be happy to take formal submissions or engagement from users on that, engage with them and go through the process of making a decision.

As for whom the questions on the census form capture, as I said, the CSO does not really have a principled adherence to the questions as framed. I would expect that if change were proposed to the questions, there would be some resistance from other user groups in this space, based on the experience of the consultation for the previous census, although that is not to say they will not change. I would caution that census questions have to be understandable and comprehensible to the entire population, and framing questions in an overly complex way will make the data suffer. That has to be borne in mind, not least by the CSO, when questions are proposed for inclusion on the census. Even so, they can absolutely be changed with the agreement, to the greatest extent possible, of all users in this space.

Turning to the accessibility of previous census data, the CSO recognises the importance of ensuring our website is accessible to everyone, and we are committed to making our web content available to the widest possible audience, including those who use assisted technologies. We are focused on improving website user experience for everyone and we welcome feedback on accessibility and all aspects of our websites. We are working to update aspects of our website to improve content accessibility for everyone who visits it, including both technical updates to the website and policy updates to ensure the content we publish is optimised for universal access.

To respond to Deputy Tully's comments on the use of the data, the CSO's role in this regard is to make the data as accessible and available as possible. As regards outside organisations using the data, there is only so far the CSO can go. However, we try to make it as accessible as possible and push awareness to the greatest extent we can.

On resourcing, I think that is one question on which, to use a horrible phrase, we will have to get back to the committee. I do not think we can answer it here today.

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.

Ms Jacqui Browne

Following on from many of the points made by IHREC, which are very helpful, it is so important, and I understand we are speaking by and large about a particular responsibility, to understand there is a vast amount of research going on, especially in the university sector. Part of the standing and credibility of every university in this country is based on its research work and on the funding it can attract. I would very much like to see if the committee would call for disability-proofing of any funding that is afforded to any research institutions to ensure the research is of high integrity and that it reflects the human rights model of disability, particularly when it comes to any research related to disability.

A great deal of work is being carried out, and sometimes one would have to question the basis and foundation upon which some of this work is being carried out and whether disabled people have even been involved in this research. There is a great deal more work happening in the health and social care area on what is known as public and patient involvement initiatives. That is a model that can be replicated throughout the country in other research and higher level institutions. I am including the medical research institutions in that together with the Health Research Board.

Disability permeates the entirety of our lives as we are not just neatly boxed off into little areas. That is something we highlight and bring to the attention of the committee for its own report, when it is drafting it.

Deputy Holly Cairns

I thank all of our guest speakers for appearing before the committee today and for sharing their insights on disability-proofing and data. It is a very important topic, but probably not on the face of it because people do not very much realise how important it is. Disability-proofing is simply ensuring people with disabilities are considered and included in the development and implementation of structures, policies and practices. Unfortunately, despite this being mandatory, we can safely say it does not happen in any meaningful way in the spirit of the UN Convention on the Rights of Persons with Disabilities.

My first questions are for the DPO Network. This topic intersects with several articles of the UN Convention on the Rights of Persons with Disabilities, not only Article 31 but also the general obligations on participation in Article 4 and the general equal recognition before the law in Article 12. In that vein, I would like to zoom out for a minute and talk about the network’s capacity to be able to participate in these processes. As DPOs, they perform a vital function in our realisation of the convention, but equally, with their small organisations, more and more is being demanded of volunteers, who themselves have lives and a myriad of challenges faced by disabled people in Ireland. I do not know how many times we have had DPOs before this committee, not to mention all of the other work these organisations are doing. What do DPOs need from the State and State bodies to help them fulfil their role as envisaged by the Convention on the Rights of Persons with Disabilities?

The DPO Network highlighted the importance of applying a consistent model of disability rights in data collection. Will the network elaborate on that and on its significance?

The state party to the Committee on the Rights of Persons with Disability states that the National Disability Authority undertakes, commissions and collaborates in research projects and activities on issues relating to disability. Has this state party engaged with the DPO Network on this type of work?

If there is time afterwards, Chair, I ask the Irish Human Rights and Equality Commission, in its role as an independent monitoring mechanism for the convention, to summarise its assessment of Ireland’s compliance with Article 31. The commission has highlighted the importance of disaggregated data in legislation for monitoring the Convention on the Rights of Persons with Disabilities and for disabled people to realise their rights. Will the commission explain a little bit more what it means by that? Does it have a sense of areas where we have a lack of data that is connected with violations of disabled people’s rights?

Ms Jacqui Browne

I thank Deputy Cairns very much for her very insightful questions. I will talk to the committee about the capacity and resources of DPOs in general.

As the Deputy quite rightly identified, we are quite young in our genesis but an awful lot of us have been around a long time - some like myself a bit too long, maybe. We are working together and working very closely, which is great. However, every single one of us and all our members are volunteers. Even in preparing for today's meeting, we have come here to give of our time. Some people are missing university lectures, some are missing work and some are missing doing other things in their lives. This is our level of commitment but we cannot sustain it in the long term. First of all we need a national register of DPOs. Second, we need due recognition of DPOs under Article 4.3 and general comment 7 of the UNCRPD. We need to not only be recognised but resourced financially and otherwise, and not with piecemeal little bits of project funding. We need multi-annual funding. We need to have the confidence that we have sustainability. If we are talking about sustainable development goals, particularly given the nature of the work we do and the effort and time involved, there is no point giving us project funding for six months or a year. We need a guarantee that we can plan for, say, the next three years. We need to develop a work plan that is realistic, achievable and that can involve more and more disabled people and organisations for disabled people. We cannot do that on fresh air. I thank the Deputy for that question. It is important. We have called several times already for a national register of DPOs to be established properly. We see that responsibility as lying predominantly with the Department of Children, Disability, Equality, Integration and Youth in order to maintain that focus on the human rights-based approach and given its responsibility for the convention in general as the lead Department. I will hand over to Ms Hassett to address the research question because she is very well placed to answer that in her personal role as a member of the DPO Network. The DPO Network has never formally been approached to engage with the third level sector.

Ms Amy Hassett

I have two points. The first relates to the resourcing of DPOs. Everything Ms Browne said is exactly on point but I want to add one other thing. As DPOs, we need to know that the contributions we are making to Departments and State bodies on various things are actually having an impact. It is very difficult. We are all doing this in our own time. For us to secure and maintain funding and to motivate ourselves and support members and people to build capacity within our network, we need to know that what we are doing is having a demonstrable impact on disabled people. We are consulted an awful lot. We are asked for submissions on various different topics probably at least once a week, most of which we do not have the resources to provide. When we do, there is no guarantee that what we are saying is going to be taken on board. Often it is not. I will give one specific example. Ireland recently released its third national strategy on gender-based violence. As part of that process, we and the Disability Participation and Consultation Network held a consultation and collaboration with Inclusion Ireland. Nem Kearns can speak to that. As part of that, we spoke about different challenges experienced by disabled people, including the increased risk of gender-based violence people for who are disabled. If you are disabled you are twice as likely to experience gender-based violence and that will increase quite significantly if you have a psychosocial or intellectual disability. In the entire document that was produced by the Government, the only time disabled people or the word "disability" were mentioned was in the name of our two organisations. There was nothing in that strategy that related to disabled people. There were no mechanisms to specifically protect disabled people and nothing to ensure existing mechanisms are made accessible to disabled people. There was no mention of disability proofing. There was absolutely nothing. We hold these consultations in our own time and provide the submissions and there is no guarantee that they are impacting on policy. We need to look at that. Half of the problem is that disability issues are seen as separate to other issues. This is contrary to the UNCRPD. The UNCRPD says that disability must be involved and engaged with as part of all policymaking. That is just not the mindset we have currently. I just wanted to highlight that because because I think it is really important.

The second thing is about collaboration on research projects. As time goes on, we are being engaged a little bit more. We are currently engaging with the NDA on a piece of research about the Assisted Decision Making (Capacity) Act so we are part of the advisory group on that. As Ms Browne said, we are a very new network but so far we have been involved in a couple of different capacities.

Dr. Iris Elliott

I think the Deputy for her questions. Regarding the work we are doing on Article 31 and the independent monitoring mechanism, there is an independent monitoring mechanism under Article 33 so we looked to guidance around the operation and implementation of Article 33 as well as Article 31. On the guidance available, the Fundamental Rights Agency in 2018 said about setting up a monitoring system for the implementation of the UNCRPD that there needed to be a system to assess the impact of legislation and policies. There is a need to develop indicators and benchmarks and also to develop and maintain databases. That provides some degree of a framework. As the chief commissioner mentioned, we have been working for over five years trying to establish a national data infrastructure but also work at a European level so there is coherence across member states and comparability in terms of disability data. There are many different areas of work that we are engaged in within that kind of framework.

One of the things we have done that has been very important for the commission is to convene stakeholders and name who we think needs to be involved in the work around strengthening and developing a national data infrastructure that would support our monitoring role. The audit CSO colleagues conducted in 2020 of publicly available datasets found that only 22.4% of those included disability and often did so in a limited way that was not disaggregated. People are just asked about disability and not necessarily impairment. The focus is really on a human rights model of disability and a functional approach to disability. We have been doing an awful lot of work in this area.

We have not done a formal assessment at this stage but in the absence of UNCRPD monitoring opportunities at the UN, we have been preparing a series of reports to the Committee on the Elimination of Racial Discrimination. We made a submission to the Human Rights Committee on civil and political rights last year, to the Committee on the Rights of the Child this year and next year we will be doing it for the International Covenant on Economic, Social and Cultural Rights. We have found that the data are exceptionally limited. The national data infrastructure is weak and incomplete. It is insufficient for us to do our job as the independent monitoring mechanism but it is also insufficient for the State to operate and implement the convention. In speaking of that significant failure, I do not want to understate it. We see this as a real moment of opportunity for Article 31. Without being overly optimistic about it, the fact that we are now developing an equality data strategy in this State, and will be the first European member states to do so, is a huge opportunity. People are looking to Ireland for what we will do around that. We would have a strong disability focus and the equality data strategy is extremely important so we have a strong disability data focus in all of the national equality strategies and particularly the successor to the national disability inclusion strategy, which was very limited. It is also important where there are opportunities for legislative reform. I would stress that. As part of our role as the independent monitoring mechanism, we repeatedly call in our legislative observations and submissions on legislative reform for very close attention to be paid to data.

We will, of course, find that some actors are very proactive and positive around equality data, but it is not sufficient to be resting on goodwill in quite an ad hoc way. We need a mandatory provision around equality data. Self-evidently, there is an opportunity in the equality legislation reform, but I think we need provision in areas such as policing. We have had particular engagement around the lack of disability data in policing data. I will send through to the committee an exceptionally strong concluding observation from the UN Committee on the Rights of the Child, CRC, on equality data that was published last week. It sets out what the UN is now saying the Irish State needs to do about data, including disability data. The CRC also published some very strong recommendations on disability, which I will also share with the committee. There were over 20 concluding observations relating to disability that hopefully will be relevant to the broader work of this committee.

Nem Kearns

I thank all speakers. I specifically thank Deputy Cairns for asking the question about the commitments on resourcing. I want to add to what my colleagues have said to highlight certain aspects. Because our State bodies tend to work in silos, we have a very piecemeal and ad hoc approach. It is great to see more consultation happening, but it needs to be better thought-out and done together. For example, recently, Disabled Women Ireland, DWI, was asked to make a submission to the Group of Experts on Action against Violence against Women and Domestic Violence, GREVIO, on Ireland's implementation of the Istanbul Convention. As other witnesses have highlighted, we were very constrained by the complete lack of data available in Ireland and the fact that the little data available in Ireland are not comparable internationally because we are not following international best practices. Race, ethnicity, disability and sexuality are known to be huge risk factors and contributing factors in sexual violence, but we do not collect that data. We do not really collect data on disability. Those were all things that constrained us in our submission. At the same time as we were doing that, we are also submitting to the CRC. That is the period that the CSO held its public consultation in. We, and many other DPOs, were not able to submit to that consultation. I am not saying that to criticise anyone, but it is just that there is not yet an understanding of the work and role of DPOs and the multifaceted identity of disabled people. There have also been several times in the past where public consultations on specifically disability-related schemes or legislation have occurred at the same time, without checking to see what commitments that would put on DPO resources and if it could be better timed. The foundation of accessibility is flexibility. I know that there will be restrictions on how consultations can be carried out. However, I think we need to reframe, be ambitious and look at a more ongoing forum for consultation rather than having these two- or three-week periods for consultation whereby if an organisation is not able to submit in that timeframe, its views go unheard. We need to have a better mechanism for consulting on those issues. It can be done and we are able to do this. The Irish are a very inventive people.

In reference to Deputy Tully's point, and this is not actually an attempt to flatter, but an example of good practice that I have seen in public consultation was actually the the call for public submissions by this committee when it was convened. We were supporting a number of individuals who wished to make submissions to do so. There were accessibility barriers in how the consultation was set up and worded originally. When that was raised with the clerk of the committee, it as resolved within 24 hours. That is what we need. We need that adaptability and listening. We need to ask whether something can be changed rather than saying that we have what is written here, and we will look into making the change the next time we review it in five years, ten years or whatever. I just wanted to highlight that as a very good example. I would love to see more of that. It is not that we expect everything to be exactly right for every person the first go round. If that is the reality, we need the adaptability of noting that there is something that we did not think of and it can be changed.

Ms Sinéad Gibney

I thank Dr. Elliot for answering Deputy Cairns's questions and thank the Deputy for the range of questions she asked. I will build on a few of the responses in addition to what Dr. Elliot has contributed. Firstly, in terms of the role of IHREC as the independent monitoring mechanism, as Dr. Elliot said, we have not done that formal assessment of compliance at this stage. I remind committee members that until the optional protocol is ratified that designation does not become formal for us. We have a number of different monitoring designations including in the area of human trafficking, for example. We have an incoming designation on the UN Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment. We do our best to operate as the independent monitoring mechanism. For example, we have a disability advisory committee in place. In the ways that Dr. Elliot has listed already, we have engaged with many other different State actors in any forum can, operating essentially as that independent monitoring mechanism. It is crucial, and I want to use this opportunity to really urge members to push for the optional protocol to be ratified, because all of these mechanisms are dependent on that ratification.

I want to touch on the Deputy's final question on the connection between data and the violation of rights. To provide a conceptual answer, if I may, human rights are for everyone. No matter the area, where there is a lack of data that might either contribute or fully prevent the realisation of those rights for people with disabilities, it means that we cannot say that we have that right. For example, if the lack of data partly or wholly contributes to a person with a disability not being able to access the appropriate education that they wish for, then we cannot say that in Ireland we have a human right to education that is realisable. It is important to think about it in that way because I think that might help the members, as legislators, to understand why the rights-based model is so important. We have to think about those among us with disabilities as being able to enjoy the same human rights that we all do. That will direct us in designing policy and legislation in the right way. The concept of human rights being for everybody is helpful in framing that.

Deputy Jennifer Murnane O'Connor

I thank the witnesses for attending today. We understand the importance of this particular database. It is so important. We have heard that the production of the results of the Census 2022 is expected to commence in May and that the CSO is committed to producing a wide range of statistical tables generated from the data on disabilities. It has also said that over 50 detailed tables relating to the disability were produced from Census 2016, and at least that number will be produced from Census 2022. Perhaps that could be explained to me.

The other concern I have is that we are now speaking about Census 2027. Do the witnesses feel that there was enough meaningful engagement with the different groups and agencies? I have a concern over that. The reason we are speaking about Census 2027 is that the CSO is saying that meetings have already been held with organisations representing people with a disability and these will continue. I understand that there will be an online response option as well as a paper option. A lot of things are online now. Mention was made of a website also being designed. We have just completed a census, which is so important. Information is crucial for people with disabilities. Have we failed with that? While it is welcome that we are speaking about Census 2027, responding online and website, are there perhaps areas that we have failed on? As previous speakers have said, there are huge issues with communication. We must ensure that these are addressed. We have discussed the need to segregate disability data. To me, it is vitally important that the data are segregated. I welcome the organisations' opening statements, but I just feel that we need to do more.

There is a barrier there and I see it myself daily. We see it here in our committee as well when we speak to people with disabilities. I refer to difficulties with accessing housing, as other speakers referred to, services and even resources. I feel this is important. It worries me now that while the 2022 data are still being brought out we are now moving to 2027. Perhaps I might get a response on this aspect.

It is important to state that all of us here are working for the good of everyone and to ensure these data are there and are accessible. I welcome it being mentioned that the wording had changed in the census because it had been a little bit of a barrier. One thing I have learned from this committee, though, is that when we are working with groups and organisations in a field of their own, they know exactly how we can do this best. We have learned that we must always listen to the people who need the supports and changes and ensure we can look after them.

Chairman

I think the Deputy. I call Mr. Halpin.

Mr. Cormac Halpin

To respond to the question from the Deputy around the 50 tables, these were in the dedicated thematic release relating to disability from 2016. There were more like 90 tables across the board produced across the full suite of information from 2016 where the disability variable was included. What these tables I am referring to do is to cross-tabulate people with the various categories of disabilities that appeared on the census form in 2016 with other key variables on that form. For example, "general health", "economic status", "social class" and "socio-economic group". Geographic aspects are also included, so they would be disaggregated down to county level, electoral division level and then down to small area level. This is really about bringing out the various different characteristics of persons who reported on the census form that they had a disability and locating where they are in the country. This is the essence of census data.

Turning to the 2027 census, we are open to including any different cross tabulation that users or people might want to include. The only real limits we have on producing census tables is ensuring that we do not disclose information about persons on an individual level. This goes across the board and is possibly the key tenet of census taking. Subject to that constraint, however, we can cross tabulate the disability data with any other data on the census form and produce it to the lowest level of geography possible, which allows this disaggregation that is so important to users. Looking forward to 2027, it is going online. I stress it is early in the development of the 2027 census. Why are we talking about 2027 now? This is, unfortunately, the way the census works. It is an unusual project in that it has an immutable deadline. The census will take place in April 2027 and this cannot be changed. This aspect brings its own dynamics in terms of working backwards when certain things have to be achieved. We must, for example, have all our IT systems ready in 2026. This cannot change, because if that does not happen, then the census cannot take place in 2027.

This means, therefore, that we must start preparing for the next census before the current census data has been disseminated. If we waited until the dissemination programme for this census was over, then we would not be able to have a census in 2027. This would be particularly the case because it is going online, which is bringing up major technical challenges around data security, storage, etc. We must start preparing now, and we must also start preparing the questions. We intend to hold a census pilot next year in September, which will test the new questions and any revisions to existing questions that will be included in the 2027 census to ensure they are comprehended by the public and deliver accessible and good quality data. This is why we must have the consultation now. It will allow us to form a census advisory group which can give us recommendations and allow us to form those subgroups. I take Nem's point that it might not have suited every group. We have had 400 submissions from hundreds of different organisations across the board regarding the census and it is probably difficult to suit everybody. We can probably work offline with Nem, though, to see if we can accommodate additional submissions from the DPO network relating to the disability question. We do not want to be exclusive, rather we want to include everybody to the greatest extent we can.

The comment I made in my opening statement about the organisations we worked with was for a very early pilot test of going online. It was very limited and we will do much more testing as we go. Accessibility is a key consideration for us, so we will continue to work with those organisations we have worked with to date and expand this endeavour to other relevant organisations. A key facet of the census is coverage. The fewer the number of people who complete the census, the less valuable it is. We want to be as universal and accessible as we can. There have been challenges in the past. Part of this has related to the paper form. We know people have had difficulties completing the form, but we are hoping that going online will alleviate some of these difficulties. We will, though, still have the same level of support in place that we had and hopefully we will enhance it going forward, especially with the focus on the website, to make it as accessible as possible. It is in the CSO's interest to be able to say that we got to 100% of the population and did not exclude anybody. If we exclude groups, that casts doubt on the data. We will, therefore, strive to the greatest extent possible. There is much international experience, especially in other English-speaking countries, regarding censuses that have gone online. We have close relations with all those countries and we will continue to liaise with them to bring best practice to the greatest extent possible to make the census 2027 accessible.

Deputy Jennifer Murnane O'Connor

I thank Mr. Halpin. I welcome that information because from listening to our speakers this morning, communication with all the different groups, everybody involved here, is going to be critical. We have a few years to get this process right and we must have it right this time. No one should feel they could not access, understand or were left out of the census. This is why this meeting is so important to ensure we do this right the next time. If we have made mistakes this time with the census, we should ensure we do not make them the next time. I again thank Mr. Halpin and I appreciate his response.

Chairman

I call Ms Browne.

Ms Jacqui Browne

I am thankful for the questions asked. I very much welcome the comments made by Mr. Halpin. This is very helpful for the DPO network. Off the top of my head, I urge a couple of things immediately in reply to the CSO's amenability to being open to a submission from the DPO network. It should not be forgotten that this is an alliance of the five national DPO groupings. What would be richer and far more valuable, if it could at all be organised, would be something like a morning or afternoon spent in face-to-face consultation with representatives of the DPO network. We would find that much more engaging and enriching. Irish Sign Language, ISL, interpretation would need to be organised. On that note, in terms of communication, when we are talking about going online, has the CSO considered and even thought about having ISL videos? I refer to how deaf people who use sign language as their first language are going to access and participate in the online census. This is just another example to add to the examples Nem gave around accessibility of the census. This is apart from the questions to be asked. The DPO network would very much welcome the opportunity to engage in this regard and our preference, bearing in mind the various needs, issues and ideas we have to contribute, would be for a face-to-face consultation. This approach would be far more valuable for us.

Chairman

I thank Ms Browne.

Deputy Dessie Ellis

I thank everyone for their inputs. Disability-proofing and data in this regard are extremely important. Our goal must be to ensure this type of data collection happens. There are huge challenges in this regard. I refer to population growth. The ageing population, especially, is a big challenge for us. It is generally accepted that the cost-of-living crisis has affected people with disabilities more than anyone else. An issue was raised about children with disabilities, like autism spectrum disorder, ASD, who were involved in legal actions against the State without their parents' knowledge. Dossiers were kept on them. How widespread is this practice? What penalties are faced as a result of this? I ask this because I am sure there are plenty of other areas where this is happening, where actions are taken against the State and the people involved are being marked out for special attention, if we wish to call it that. I am just curious about this aspect.

In the context of the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, I also wish to ask about the Mental Health Act 2001 and ensuring it is UNCRPD-proof. My experience over the years regarding people with mental health issues is that they have been turned away when they have turned up in accident and emergency departments. We are now supposed to have psychiatric nurses on hand, but this development only happened in the last two years or so as a result of having a huge number of people being turned away from hospitals. Do we take note of all this? Many of these people have dual diagnoses as well and this is not catered for. I am wondering about this issue as well.

Turning to the witnesses from the CSO, I have a case in hand and an issue I wish to raise in that regard. I have a person with schizoaffective disorder who is on disability allowance. He received a notice from the Department of Social Protection to tell him that his disability allowance will be stopped unless he submits doctors' letters, etc.

The diagnosis is lifelong. It is not something that will change, but the Department of Social Protection insists on these letters being sent from doctors. Surely this is a breach of human rights. What engagement has taken place with the Department? This is only one example of many I have come across. These are lifelong diagnoses. On the original application for, say, social welfare, a box is ticked to indicate whether the condition is long term, short term or temporary. The applicant ticks the long-term box. I am curious as to whether those forms are checked. Do we have a way of checking all these application forms? Is the onus on the CSO to do that? I am not sure but I am curious as to whether this issue has been raised with it.

Dr. Iris Elliott

I thank the Deputy for his questions. As I said, Article 31 needs to be considered in the context of every article. The Deputy raised questions regarding the health, adequate standard of living and social protection articles. As I mentioned, our view is, regardless of whether something is a health matter and, potentially, perceived as a medical and not a disability-relevant issue, we must still have a human-rights based approach to data systems. Those systems operate in a very everyday way. They involve people trying to access a health service or welfare benefits. The EU guidelines are a useful resource because these reference co-operation between institutions and a whole-of-government approach in order that people do not have to give their information repeatedly. In particular, if someone has a lifelong condition, there should be a way in which the burden is not on the individual person but is part of a broader system.

In the context of development of the equality data strategy, it is useful we have colleagues from the health sector. For example, we have people from the Health Research Board and the Department of Social Protection. On our equality data work, we are on the Department of Social Protection's technical advisory group on research and data for the Roadmap for Social Inclusion, which touches on what the Deputy said about the cost-of-living crisis. Obviously, the preamble to the UNCRPD mentions poverty because, self-evidently, poverty disproportionately affects disabled people.

The Deputy's questions speak to the complexity of what we need to hold around equality data and the implementation of Article 31. We need to approach it in a clear, systematic way. Otherwise, the task becomes too large and people are put off even having a conversation. I will go back to what I said about the importance of convening all stakeholders and involving all core Departments, public bodies and DPOs in that co-ordinated conversation. Ireland benefits from the fact there is so much international guidance. There is European-level guidance. For example, when we talk to the HSE or the Department of Social Protection, we are holding them to account as the national human rights institution and the national equality board, but we are also there to assist and to say to people there is guidance. Of course, we do not expect every public body, Department or private organisation to be aware of that guidance. Part of our role as the national human rights institution and national equality body is to be available and to provide support.

From our point of view, members are giving very everyday examples of where the reality hits as regards human rights and equality in respect of their constituents and broader members of the public. That is why the public sector duty has been so important and why we are working through it with all public bodies. We are providing guidance to them. This year, we will provide guidance on the European guidelines and what they mean in an everyday, national context. We are working very closely with public bodies, including the public bodies data protection network, to try to look at things such as the general data protection regulation, GDPR, etc.

There are things we can do to try to change things. My reflection is these are long-standing issues. People with psychosocial disabilities are turning up at accident and emergency departments needing a healthcare service, and because of diagnostic overshadowing, stigma, prejudice or a lack of provision, they are being turned away or their right to access healthcare is not being adequately realised. I cannot speak about those individual incidents but they are part of a broader, general pattern. Sometimes, data feel quite removed and abstract, but if we had proper data systems, we would be able to come up with what is currently happening in addition, as the first question indicated, to modelling and future-proofing, which again is a very strong strategic priority for the commission. Especially following the Covid pandemic, we need to learn the lessons about how we need to future-proof data systems.

Ms Grace Murphy

I will pick up on a point about change and the need to-----

(Interruptions).

Chairman

Ms Murphy's screen has frozen. We will try to get her back online. In the meantime, we will take a comment from Mr. Culhane.

Mr. Kieran Culhane

I will address the Deputy's comment on data from the Department of Social Protection. We do not check individual data. Each Department has responsibility for its own data.

I will echo Dr. Elliott's comments. We offer advice and we are developing an equality data strategy to try to encourage Departments to collect the right data and manage those correctly. We use the principle of collect once, use often. The Deputy's example shows there are gaps in the system at present. Not all the data systems are mature enough for the data we need on disability. It is something we are working to try to improve at present across the entire public sector.

Deputy Dessie Ellis

I know the CSO does not gather individual information. However, there are so many different forms and some people with disabilities cannot fill them out, whether it is because of a mental health issue or schizoaffective disorder. They cannot even get a bank statement, if it came to that. There is such a big gap. Someone needs to sit over what these forms are asking people to do. It seems crazy.

Chairman

We will go back to Ms Murphy. We had a technical hitch.

Ms Grace Murphy

I will pick up on the Deputy's point about the importance of supporting disabled people, not just at certain junctures but on a continuous basis. As a physically disabled person, I have supports for a good while when I am in college but, once I graduate in 18 months' time, we will then have to start the whole process again as I transition. None of the breakdowns that happen at transition are sustainable for anyone, not just for me as a physically disabled person but across the board and across the spectrum of disabilities. There is a need to plan forward. That is why data collection is so incredibly important.

Senator Erin McGreehan

I thank everyone for their time. This is a very important issue. The crux of it is that data gaps create cracks and people fall through them. They are not seen, and when they are not seen, they are not heard or accounted for. There is a status quo and we do not see change.

I have a specific question for the DPO Network with regard to disability-proofing. We have a disability stakeholder group, which has been in existence for almost 16 years. After that length of time, we should be at a point where Departments are holding up their hands and things are changing. That is not happening, however. What changes can be made to all these groups, including the steering group, to make them more effective? How can DPOs be heard better? Do we need to put it on a statutory footing that recommendations are heard and implemented? On paper, it is excellent and people are being heard, but is it being implemented?

I will ask my next question of the representatives of IHREC. It relates to the public sector duty under section 42 of the Act that established the commission. Have any legal cases been taken against any public bodies or Departments in respect of their failure to act on that public sector duty, for not upholding the law, for discrimination, a lack of the promotion of equality, their treatment of staff or their treatment of the people for whom they provide? All of us in this room can see that Departments discriminate and do not uphold their public sector duty. They are under an obligation every year to write a report to IHREC. Has such a report ever been challenged by the commission? Is there an avenue to investigate if a report comes in that does not match up with what we are hearing in the media? Can the commission investigate if there is a perception that there may be evidence of a failure to act on the part of a public body? This is important. The commission does an incredible amount of positive work that I come across as part of the work of each of the committees of which I am a part. Does the Act need to be strengthened? Where are we, and where has the commission been, in terms of holding our Government authorities to account under that Act? I am thinking of the case of a disabled driver, Ms Leigh Gath, that is in the media today. I hope she does not mind me mentioning her. She faces a bill of €23,000 to pay for her car because she has no ability to get a car in this country. The Department of Finance and the Revenue Commission are charging that lady. It is discriminatory because she cannot get a car in Ireland and must import one from the UK. She is being charged that amount of money just to have independence. That is discriminatory. Has the commission the ability to investigate under Irish law?

Ms Sinéad Gibney

I thank the Senator for her questions around the public sector equality and human rights duty, and for her comments on the performance of the commission more generally. I will give the committee a bit more detail about the duty and how it is set out. It is in our founding legislation, the 2014 Act. It has been an obligation on public sector bodies now for eight years. We have strategically taken on more of the education, support and guidance function of our role to date, with a view to working with the public sector, making sure that people understand we are not expecting things to change with the click of a finger. Our intention is to help them with case studies, e-learning modules and training built into OneLearning. We are looking at all the different ways in which we can fulfil our mandate to provide education, support and guidance to the public sector to develop what is required.

We are strategically moving towards more of an enforcement role. That would have happened a little earlier were it not for the pandemic. That is where we are now. There is an obligation to report on all public sector bodies but that is not necessarily an obligation to report to us. One of the things that is a problem is that responsibility has not been taken by central government for the duty. We are seen as the body that deals with the duty. We have a role in enforcement and providing guidance but central government must take responsibility for promoting and holding to account the organs of the State and all public sector bodies in compliance with the duty. We have, for example, requested multiple times a circular containing guidance. We have come up against a limitation in terms of our influence in the absence of that central governmental direction.

Regarding the legislation and enforcement powers, what we have are equality reviews and action plans that are specific to the public sector duty. We will be able to use those to better enforce the duty where we see shortcomings. We have a very low rate of full compliance at the moment. We will be more active in that space in the coming years. We know there are limitations within the 2014 Act. In comparison with other jurisdictions, such as the UK, we do not have the same level of judicial review. Nonetheless we have plenty of room to grow, to test the boundaries and to push for enforcement.

Part of it is also a matter of public awareness. I encourage the committee members, as public representatives, to let their constituents know that this duty exists. I know some of the committee members are active and positive in promoting the duty. Local councillors do so as well. One of the areas where it is most relevant is at local authority level. The general public needs to learn more about the duty and we can, and will, definitely play a part in raising public awareness. I emphasise that we are not the sole guardians of the duty although we play certain roles. It must be adopted at a more complete level by central government.

Ms Jacqui Browne

I thank the Senator for her insightful questions. I want to be clear before I answer her question about the disability stakeholders group. Is she talking about the disability stakeholders group under the national disability inclusion strategy?

Senator Erin McGreehan

I am.

Ms Jacqui Browne

The Senator made reference to 16 years but it is nowhere near 16 years in existence. That does not matter. The Senator's question is very telling because it speaks to part of the problem we have in this country. We have an awful lot of disparate bits and pieces of entities, groups and overseers of the implementation of the national disability inclusion strategy, which is supposed to be the implementation plan for the UNCRPD. I will point out a couple of things. The strategy has already expired. It expired at the end of last year. We have not yet had a dialogue about a new implementation plan and how it might be overseen and, importantly, monitored. We are back to this monitoring role. I am on the disability stakeholders group and I have many criticisms of the group. It needs to be reviewed. I am not too sure at all about putting it on a statutory footing, to be honest. We have enough statutory agencies that are more than capable of undertaking the work of monitoring the implementation of the UNCRPD in this country. I would hate to see us developing another statutory agency when we have sufficient expertise in the country to monitor implementation. Any new agency would be likely to cross over the critical role of the independent monitoring mechanism that IHREC has as a function under the Act. We need to be careful how we think in that regard.

Equally important is reviewing and considering the interface between the disability stakeholders group and the public sector duty. There is an opportunity to consider if something more streamlined could be brought into effect, while holding onto a stakeholder group like the disability stakeholders group.

That is the road I believe we should travel down.

Regarding today's topic, we are faced with a lack of data, in particular disaggregated data. The committee has always published great reports and made great recommendations. I urge it to take the opportunity of today's theme, Article 31 and the other intersectional articles to address what the lacuna of data does to the implementation of the human rights of disabled people.

Dr. Iris Elliott

I will focus on the opportunity to develop indicators, and data to support them, to monitor how effectively the State is implementing Article 4.3 on participation and adhering to general comment No. 7. Through international engagement, we often hear about how Ireland looks good on paper. That is an excellent phrase to use. We have been before a number of UN committees in recent years. From our engagement with international committees, there is growing impatience with Ireland, as what people get from the State are endless descriptions of what it is doing and what policies and legislation it has. It is all activity based rather than impact or outcome based. What change actually happens? We are speaking in the context of disabled people, but the same point was made as regards children and black and ethnic minorities. The State needs to be held to account for its participation practices. Participation is a matter that IHREC prioritised as we prepared to become the independent monitoring mechanism through the disability advisory committee. Under general comment No. 7, there is good international guidance on how to develop a set of indicators on effective participation.

Deputy Ellis spoke about how disabled people had to navigate forms and there did not appear to be good communication. There is quite a request made of disabled people, particularly DPOs, to navigate these complicated mechanisms of participation without a clear sense of whether it is a worthwhile use of a scarce and important resource. Proportionality in terms of participation mechanisms is an issue. What is the effect of putting a great deal of resources into participating in them? Article 31 provides an opportunity to have an intersection between it and Article 4.3.

I welcome that there have been independent evaluations of a number of national equality strategies, although there has been none of the national disability inclusion strategy. Having independent evaluations means we can use independent analyses instead of just internal data and reflections. Disabled people and DPOs would have to be central to developing an independent evaluation of these participatory mechanisms. They are labyrinthine and time consuming and we do not have data on their effectiveness.

Nem Kearns

Rather than discussing the statutory footing and so on, I will circle back to Ms Hassett's comments on accountability in consultation. It would be great if there was an integrated process whereby, if suggestions were made by expert stakeholders or groups during a consultation, there was a responsibility to engage, implement or adopt or, where implementation or adoption could not happen, for a report to issue back outlining the reasons for same. This would provide transparency and help to refine the process over time. It would also show whether the expertise was being engaged with.

As the committee well knows, the issue underlying all of this is the ratification of the optional protocol. It needs to be a cross-cutting priority for everyone.

There is an issue around how local councils and their mechanisms are set up for consultation. There are barriers in this regard, particularly in light of how DPOs operate and exist. Specifically, a DPO that only exists on a national level is unable to participate in any local council's consultation. This matter needs to be focused on and revisited. It is impractical to expect disabled people to organise a specific organisation in each county in order to participate in consultations.

Chairman

Does Ms Hassett wish to comment?

Ms Amy Hassett

I will add a brief point to Nem's. It is my understanding that now is the time to start pushing for the ratification of the optional protocol. We were told that it was necessary to wait until the Assisted Decision-Making (Capacity) (Amendment) Act 2022 had passed. That has now happened. If I remember correctly, we are waiting on a commencement date. Either way, now is the time for the optional protocol. There is no reason for it to be delayed any further.

Mr. Cormac Halpin

I reiterate what we have said. Our basic business model sees us engage with users and all user groups. We are producing statistics and data for users, so they are key to what we do. We respond and react to the greatest extent possible to the needs of all our user groups in terms of ongoing statistical production and new data requirements. That engagement continues throughout the data collection phase and in the production of results to make them as relevant as possible to the needs of users and as accessible as possible to the users themselves. We are on a journey. We have not always been perfect, but the accessibility and usability of our data are at the heart of what we do in all ongoing and future statistical data collection exercises.

Senator Tom Clonan

I thank our fellow public servants from the CSO for attending. The CSO is independent and impartial and the data it gathers are crucial to how we evolve policy and move forward in this republic.

I echo Ms Gibney's call, which was reiterated by Nem, Ms Hassett and others, for the full ratification of the UNCRPD and to empower IHREC further to hold the Government to account and to report on the situation. Ms Browne is chair of the DPO Network and Ms Hassett, Ms Murphy and Nem are members. It is vital that DPOs be front and centre in how we navigate this space and what informs how we proceed.

Regarding the gathering of data and statistics, I am reminded of IBM in the US when it had its first supercomputer in the late 1960s and early 1970s. IBM fed a great deal of data into it about household accidents in the US. The computer crunched the data and concluded that 90% of those accidents happened on the bottom or top step of the stairs. IBM asked the computer for a solution. Using its quantitative, deterministic and positivistic software, it concluded that the solution was to remove the top and bottom steps.

I often find that many of the issues that confront and challenge our community of disabled citizens and carers are due to a deterministic, positivistic and, as I believe Ms Gibney stated, activities-based measure of our lived experience. For example, we have decongregated 5,000 people from congregated settings. That is fantastic, but where have they gone? That information is not mapped. Many are homeless or are back with parents in crisis. On paper, it looks like a positive outcome, but the qualitative lived experience is something different.

I learned from my own experience.

When I did my doctoral thesis on our armed forces, the first two years of that was a quantitative analysis of that environment. I captured the universe of the data - everything. When looking at the quantitative data, there was no problem as it applied to women. There were patterns in the data which suggested it was an explicitly discriminatory organisation but it was only when I spoke to my female colleagues, when we gathered data in that way, complementing the quantitative data set with qualitative phenomenological lived experiences, that all of the horrific lived experiences of sexual violence, sexual assault and rape emerged. Does the CSO employ any qualitative instruments or tools for data gathering of the lived experience of disabled people, which should come from the DPOs? Does the CSO conduct interviews? Is there any mechanism for incorporating participation, observation or lived experience?

What would inform a set of questions on a census document? Are DPOs formally engaged in the process of informing how the census should be compiled? When we completed ours last year, I felt that based on the responses that would flow from it, as a document it did not really capture the challenges we face as a family. In the absence of those kinds of qualitative instruments for gathering data, is there a role for the universities to do this? Should there be protected research funding in order that we can properly capture the lived experience using and an all-around 360° perspective?

I echo what Ms Browne said about DPOs. Since joining this committee I have often been involved in a meeting or a consultation with a large number of people, all of whom are being paid a salary, are receiving mileage allowances, subsistence payments and so on, with the exception of disabled people. They find themselves there at their own expense with very meagre resources and all the challenges they face in trying to get out of the front door in the morning. I echo Ms Browne's call for full and proper financial support for DPOs.

I thank Ms Gibney and Dr. Elliot from the Irish Human Rights and Equality Commission, IHREC, for showing such leadership and bringing the experiences of our disabled people out of a medical model or a charitable model into a fundamental human rights narrative, which is so important. DPOs are the future of that and the key to ensuring that we continue to move into that space.

Ms Fiona O'Riordan

I am responsible for the collection of data at household level. We do sample surveys on a regular basis - almost all the time, unlike the census, which is only done every five years. It is a much bigger event because every single household in the country is contacted, whereas we have sample surveys in which we contact about 12,000 households. They are sampled based on different stratifications and criteria. The surveys we do are, as the Senator described them, qualitative. They ask about people's experiences. As the Senator mentioned, on 30 March we will publish the sexual violence survey which we conducted last year. It spoke to people's experiences of unwanted sexual experiences.

We also had an equality module in 2019 which similarly dealt with people's experiences. We have lots of surveys like that which we do in consultation with other Departments and research bodies. The Senator also spoke about the role of the universities. We have considerable interaction with universities because we give them our research microdata files, RMFs, which are anonymised or semi-anonymised files on which they can do further research based on the questions we have asked. They are qualitative in nature, as the Senator described them. They ask about people's experiences. The problem with them in this context is that they are sample surveys and they cannot be disaggregated to the level that people would like them to be. However, we get a sense of person. On some occasions we can do different things with the data by matching them to other data etc. We do that on a regular basis.

Ms Amy Hassett

We have frequently spoken about data being missing. From our perspective and based on our work, universities have been one of the most significant sources of data that we can find. Universities often collect data in a way that it is both qualitative and quantitative. For example, on gender-based violence, the University of Galway released a sexual experiences survey in 2020 which we used in our work. The Re(al) Productive Justice project is incredible source of data for us. Universities have the capacity to provide a detailed look at different things. It is certainly a model I would like to see used elsewhere.

As Senator Clonan said, we are working on our own resources. We are currently in conversation with multiple bodies to try to access things like hybrid meetings and get resources to attend meetings. We are often asked to appear at different committees and be part of different groups. Often when we ask for reasonable accommodation, we are not answered or it becomes a big undertaking.

Sexual violence centres, Traveller and ethnic minority, and LGBTQIA+ organisations are other sources of data for us. If we could see that replicated in other areas, we would be doing very well.

In terms of engagement in the past, I do not think that we as DWI, have been consulted or asked to participate with the CSO, but hopefully as we mentioned earlier that is something we can work on in future.

Nem Kearns

Ms Hassett addressed the point I was going to raise. Civil society organisations that have a role in data collection, particularly at the intersections of sexual violence, sexuality, gender, race and ethnicity, need specific ring-fenced funding for disability collection within their data. We are completely missing that in the Irish context. They are the experts in those communities and in participatory research with those communities. I am sure the committee is aware this merits specific focus. The concluding remarks issued by the committee on the Convention on the Rights of Persons with Disabilities, CRPD, under Article 6 in addition to Article 31, stated that the collection of data specifically disaggregated on race and gender is of upmost importance. The CRPD cannot be implemented without these data. It should be at the forefront, crosscutting every article of the CRPD.

Dr. Iris Elliott

I thank the Senator for his kind words about IHREC and our participation in the committee's work. We very much appreciate it. I will particularly focus on the area of participation and citizen-generated and community-based data collection, which I have referred to as one of the five types of data that are valuable to the implementation of CRPD, although some of the comments have wider relevance. I reinforce what Nem Kearns has just said about the importance of an intersectional lens. The CRPD committee will expect that when it reviews Ireland's performance with regard to race, gender and all equality groups.

It is important to follow the money and analyse what funding is available for data work and research. I wish to flag that the OECD has introduced a disability marker in funding research so we can track how much goes to disability research. There are layers in terms of the other types of research are undertaken so we must discern whether it is ethical research or human rights-based or equality-based research. I will send further information to the committee about the work that was done at a European level through a pol-res project so it was evidence-based policy making and was very much focused on scientific integrity. There is a whole chapter in the handbooks on CRPD, scientific integrity and ethical research.

I want to pick up on the points made about engagement with the university. This is one of the areas we should consider in terms of public sector duty. As part of one of our pilot programmes we engaged with universities about the implementation of the public sector duty. In our research and data work we have always called for the diversification of the research community. I am conscious that some of our conversation so far has quite rightly been focused on consultation, engagement and the role of the DPO network. In some ways that is an external voice in terms of the work that we do on research and data. It is very important that all universities and other academic settings, plus other research institutes, are accountable in terms of their reporting around how many disabled researchers they have in their community. They are also accountable for ensuring that current and next-generation researchers get clear training, and we know how many disabled people are being trained and then how many are employed in the public service and Civil Service.

I wish to draw the attention of committee members to a recent report entitled Ableism in Academia Ireland, which was compiled by a group of colleagues at Trinity College Dublin. The report was presented to our disability advisory committee on Monday. The report is a resource because it really speaks to the challenges that are being faced by disabled people who are pursuing a professional career in academia.

I also wish to flag that IHREC, as part of its equality data work, will conduct a number of regional events over the course of the year. It will specifically engage with universities, including equality, diversity and inclusion, EDI, departments but also, more broadly, with academic colleagues. Again, that is another reason I will look forward to this committee's report as it will inform our thinking about that type of engagement.

Ms Jacqui Browne

I thank Senator Clonan for his kind comments and his questions. Some of the issues that I would also have with qualitative research speak to a lot of the conversation that we have had here this morning. Much of the current qualitative research is based on the medical model of disability so it might not answer the questions posed by the Senator and in which we are interested. Again, I will go back to a lot of what Dr. Elliott spoke to, namely what is the basis of the research and is it done in consultation with disabled people. Nem Kearns and Ms Hassett spoke about being consulted and involved directly with participatory action and research. Some of the qualitative research that I have seen, and other databases other than the CSO stuff, tends to be data or qualitative analysis that is based on medical settings so we only know little pockets of information about people in receipt of HSE-funded services or how many people are on a waiting list but that information does not include all disabled people. Therefore, we are not getting the full picture in terms of the range of population, the numbers and the issues faced by disabled people.

Another big problem in this country are transition points such as the transition from babies to children. When a person reaches 18 years of age, it seems that all of a sudden one drops off the cliff of one service and belongs nowhere. As Ms Murphy pointed out, there is the potential that she will drop off another cliff in terms of services when she graduates from college to even consider the next step to take in her career. These breaks in services are extremely challenging for people and create a huge worry at a personal level. Apart from trying to deal with studying, building a career, having a family, whatever or a combination of things, extra stresses and burdens are placed on disabled people unnecessarily. We must address these transition points and address the rights of disabled people across the life spectrum.

Dr. Iris Elliott

We, in IHREC, are very proud of ourselves as we now pay a stipend to members of our disability advisory committee and we think we are the first public body to do so. We pay the stipend in recognition of the expertise that members of the disability advisory committee contribute to the work of IHREC. Obviously, we will learn through that process and we very much want to share that experience with other public bodies or other participation mechanisms to see how that might work in practice. We do that because we think it is very important, as Senator Clonan has mentioned, that disabled people are recognised for their expertise and, in some ways, compensated for all the costs involved in participating in a range of different mechanisms.

Ms Grace Murphy

I will touch on two things mentioned by Senator Clonan. The real strength of DPOs is being able to advocate for the supports that disabled people need to live sustainable lives, to be financially sustainable, to contribute to the economy, to contribute to discussions on environmental sustainability and financially sustain themselves as a result. We, as DPOs, also need the data in order to be able to make what we hear on a regular basis leads to the changes our members want.

Senator Fiona O'Loughlin

The presentations and this discussion have given us a lot of food for thought. I reiterate what has been said about the optional protocol and I know that we are all in full agreement about the matter.

I took on board what Ms Hassett said about support for consultation with this committee. Due to the leadership of the Chair, this committee prides itself in hearing the lived experience of people with disabilities. In our meeting yesterday, we had, I think, 110 presentations from people who live with disabilities, and that is hugely important. The point has been well made that there can be a difficulty around consultation. We need to acknowledge and support all consultation either at this committee and at whatever level of consultation or committee.

I found it interesting to hear from Mr. Halpin about the process. Disability proofing is hugely important as a means to ensure proper policies are put in place. Without the correct data and disability proofing there will be ongoing discrimination, unintentional as that may be in a lot of cases. It was interesting to hear about the gaps outlined by Mr. Halpin. I thank him for doing so and for saying that the situation will be rectified.

In terms of people aged under-65 in nursing homes, the committee spent quite a bit of time talking about that last week.

Time and again, we come across the lack of awareness and supports particularly for those with acquired brain injuries as well as for those diagnosed with an intellectual disability that is not captured in the intellectual disability database. Of course, that is without talking about those in wheelchairs. It is hugely important that we get that right in the next census.

I have questions for the different groups but I would turn first to Mr. Halpin on how the CSO now complies with internationally accepted norms and ethical principles in the collection, use of data and the balance between the need for privacy and data protection.

Mr. Cormac Halpin

My particular area of expertise is the census. Mr Culhane or Ms O'Riordan might want to come in on other parts of the CSO. The census uses the phrase "privacy by design". It is integrated into every part of the census from the enumerators going out delivering and collecting the forms, returning the forms back to the CSO securely and the processing of the data. That is the phase we just finished from the 2022 census. In the CSO, and particularly the census which is our biggest interface with the public, we recognise that breaches of confidentiality or privacy could be fatal to the census, and that if people do not expect their data will be treated in a fully private manner, they will be less inclined to comply with the next census. As I said earlier, reduced coverage rates in the census fatally impacts on the quality of the data. Therefore, we put huge stress on ensuring that people's privacy is respected.

On the process for the questions themselves, as I outlined earlier, we launch a public consultation, which we did towards the end of last year where we advertised that the census 2027 questionnaire was being looked at again for change. We advertised that on social media, on our website and in national newspapers. We also wrote to a wide range of data users and stakeholders. They were invited to make submissions on the census questionnaire for 2027 on the changes they want made. We have received 400 submissions on that from a very wide range of organisations across the board. The next phase will be to appoint a census advisory group which will be the ultimate decision-making body that will make recommendations to the Government on what questions, and what revised questions, will be included in 2027. It is in the remit of that census advisory group to appoint subgroups of subject matter experts - they do not necessarily have to sit on the plenary body - to look at individual questions, take it out of that forum and spend more time teasing through what the user requirements are and to make sure the questions themselves are acceptable to the users and comply with different international standards or norms that might apply to the different questions on the census form. Those subgroups report back to the census advisory group which then makes recommendations about what questions should be pilot tested. We have had a long-standing convention in the census whereby we do not include a question on a census form unless it has been successfully pilot tested. By successfully pilot tested, I mean that it has been comprehended by the public involved in the pilot, that the response rates have been high and that there has not been adverse feedback from the public that have been involved in those pilot tests. The census advisory group will have sight of all of that when they reconvene after the census pilot which will take place in September 2024. Ultimately, it makes decisions which it puts to the Government on what questions should be included in the census. We would expect that process would take place around the middle of 2025. The Government ultimately has sign-off on the census questionnaire.

We do it through that really detailed engagement with users. As I said earlier, the CSO is very reliant on users and subject-matter experts around the census to help guide us and ensure that we comply with primarily their needs but also international norms around data collection. We also have very close contact particularly with the other English-speaking countries around how they frame their questions and on the consultations they have done because a lot of the issues that would apply to us have applied to other countries as well. We are driven by users and subject-matter experts in how we frame the census questionnaire to make sure the questions comply with norms and what is needed.

Senator Fiona O'Loughlin

I thank Mr. Halpin. It is good to see Ms Browne back presenting to the committee. I also welcome Ms Murphy and Ms Hassett. My question to them is around the last national disability survey undertaken in 2006, which was 17 years ago. When do they feel the next one should be taken? What would they like to see in that?

Chairman

Ms Murphy or Ms Hassett might answer that. I know that Ms Browne had to leave.

Ms Amy Hassett

Grace and I were both very young in 2006 and we do not remember that survey, but it is absolutely essential that we have that kind of data. On what should be included, there should be a human-rights based focus on disability and how we frame those questions around disability. The key thing for us at Disabled Women Ireland is that we ensure we collect data on gender in a way that is not just male or female, but that we are inclusive of gender minorities. We have no data on gender minorities in any area and, in much of our work, we have to insert a footnote which states we know these issues are significantly more impactful on gender minorities who are not men and women but we just do not know the situation. It is really important that we capture other sorts of demographic data around ethnicity and various intersecting identities because it is essential for us to be able to identify. One of the topics of today's meeting is disability proofing. One of the things we find very difficult is that we have anecdotal evidence from our members that certain barriers are more significant if you are part of different categories, if you have multiple intersecting identities or certain impairment types, but we simply do not have data on that. It is really important that we capture that in as fine-grained a way as we can. It is also essential that we do this in a way that is as flexible and as accessible as possible. That means producing plain English and easy-to-read forms, ISL forms, screen-reader accessible forms or whatever way we do it. In our work, we try to do things in multiple formats to make sure we do not miss out on anybody in that way. Grace or Nem might add to that.

Chairman

Thank you. We might leave it at that. I thank all the witnesses for their incredible insight into the collation of data and what we need to do in future. I thank the members as well. As with every meeting, we look at what we should now do on all the issues that were thrown up. First, we should make a submission to the CSO on the evidence we have got over the years on data collection and how we see the census going forward from the evidence of the lived-experience we have heard. The optional protocol comes in every day. The review of the Disability Act is something we will have to look at. Deputy Ellis made the point about forms and data. That is a separate issue we need to look at too.

I thank all the witnesses for their continued work and the information they gave us this morning. It is hugely important. We will get back to them for further clarification on issues if necessary. I thank them for their professionalism and dedication and I thank the members who, as always, are very interested in the topic. I also thank our team.

The joint committee adjourned at 11.59 a.m. until 3.15 p.m. on Wednesday, 23 February 2023.