MoU between the CSO and Department of Children, Disability and Equality in relation to the National Disability Survey

Memorandum of Understanding between the Central Statistics Office and the Department of Children, Disability and Equality in relation to the National Disability Survey

This Memorandum of Understanding is made on the 13th day of March 2025 between The Central Statistics Office, Skehard Road, Cork, T12 X00E (the CSO) and The Department of Children, Disability and Equality, Miesian Plaza, Dublin 2, D02 XWI4 (the DCDE)

Scope and Purpose of the Memorandum of Understanding

1. The Central Statistics Office (CSO) carried out a National Disability Survey (NDS) in 2006, which followed the Census that year. That survey looked at the nature and extent of impairment for those who had a disability; availability of supports or barriers; and social and economic participation.
2. It has been proposed that another similar National Disability Survey might be conducted in 2028 following the Census in 2027.
3. The CSO will conduct the NDS as part of their household survey programme, and the Department of Children, Disability and Equality (DCDE) will be the project sponsor and drive key aspects such as the identification of the survey data requirements and stakeholder engagement.
4. The purpose of this MoU is to clarify the roles and responsibilities of, as well as the areas of cooperation between, CSO and DCDE with regard to the NDS. It sets out the roles and responsibilities of each party, describes the legal basis for the operation of NDS, and describes the governance and operational arrangements for NDS from 13th March 2025.
5. This agreement is a MoU and is not intended to create binding or legal obligations on either Party. The MoU is entered into on the understanding that it is subordinate to the relevant legislation governing each Party.
6. This MoU also sets out a shared understanding of the parties in relation to data protection issues that may arise and roles relating to the compilation, transfer and use of this data. The processing of personal data of data subjects is governed by the Statistics Act, 1993 and the Data Protection Acts 1988-2018 and the General Data Protection Regulation.

Establishment of the Parties

7. The CSO was established in 1949 and became a statutory body in 1994, under the Statistics Act, 1993.
8. The DCDE is a Government Department with responsibility for policies in relation to children, disability and equality. Established in 2011 as the Department of Children and Youth Affairs, the Department's functions were expanded in 2020, and its mission is to enhance the lives of children, young people, adults, families and communities, recognising diversity and promoting equality of opportunity.

NDS: Context and background

9. The objective of the National Disability Survey (NDS) in 2006 was to provide a comprehensive picture of the prevalence of disability, by degree of severity and by type of disability. The NDS aimed to analyse the demographic and socio-economic circumstances of those affected by disability. Their use of and need for health, education and personal social services, their participation in different areas of life, and the contextual (environment, personal) factors and constraints which impacted on their daily lives was also examined. The information aimed to provide the basis for a rounded picture of both the prevalence and severity of disability and its impact on their lives.
In 2024 the DCDE convened a Steering Group to assess the need for another National Disability Survey. The group met and agreed to conduct a consultation with DPOs and academia, and to separately consult with Government Departments and Agencies. Following the results of these consultations, a decision was taken in early 2025, that in principle, there is a need for another National Disability Survey, and to continue with exploring the feasibility of a similar survey to 2006.

The Roles of the Parties

10. The functions of the CSO are set out in the Statistics Act, 1993. In particular, Section 10 states that the functions of the Office are “the collection, compilation, extraction and dissemination for statistical purposes of information relating to economic, social and general activities and conditions in the State”. The Office has the authority to co-ordinate official statistics compiled by public authorities to ensure, in particular, adherence to statistical standards and the use of appropriate classifications and has the authority to assess the statistical potential of the records maintained by public authorities and to ensure that the potential is realised. Furthermore, the CSO has legal obligations regarding the development, production and dissemination of European statistics under Regulation (EC) No. 223/2009 as of 11 March 2009. The CSO will be responsible for all elements of the survey’s lifecycle .

11. As set out in the DCDE Statement of Strategy (2023-2025) the Department’s mission is to enhance the lives of everyone in Ireland from childhood onwards by upholding rights, promoting equality of opportunity, recognising diversity and delivering supportive legislation, policies and services across the range of areas for which the Department is responsible.
DCDE will act as the sponsoring body for the survey ensuring that user needs, including policy-related data needs, are represented in the data requirements outputted by the NDS Steering Group referenced in 16(a) and 26.

Responsibilities of each Party

12. Operationally, roles and responsibilities are assigned as set out in the following paragraphs.
13. The CSO will be responsible for all elements of the project including:

a) The development of the survey instrument(s) with input from the DCDE drawing on relevant research and consultation exercises undertaken to identify policy and data needs;
b) The design of a national survey that can, as far as possible, meet the Sponsoring Department’s requirements and national user needs while seeking to provide for national (general population) comparability;
c) The conduct, including any and all associated methodological and/or ethical issues, of the survey data requirements translated into an operational design;
d) The assessment of administrative data potential for the NDS and the conduct of any data linkage under the CSO Data Protocol;
e) The preparation, including content and timing, of written text of report(s) and analysis published by the CSO; and
f) Preparation of anonymised microdata files to be lodged with ISSDA (or any successor) and of researcher microdata files in line with the CSO’s policy on access to data by researchers.

14. The CSO will be solely responsible for publishing the survey results in line with section 13(a) to (c) of the Statistics Act (1993). This will take the form of releases and publications that contain appropriate accessible content, both descriptive and inferential statistics. Further quantitative or qualitative research is not within scope for this project.
15. The CSO will provide appropriate internal governance for the NDS survey in line with similar large-scale projects conducted in the CSO.
16. DCDE will be responsible for the following aspects:

a) Submitting prioritised survey data requirements to the CSO in advance of the NDS data collection. This will be based on the final decision of the NDS Steering Group. It will draw on international best practice including a review of current literature and policy needs, specify priority data needs based on stakeholder consultations (including input from NGO and practitioners, the scientific and researcher community), incorporate the voice of those with lived experience, and propose validated measurement scales/disability classification frameworks for potential use in the survey as appropriate.
b) Ensuring that there has been ethical consideration of the survey data requirements.
c) Advising and supporting the development of the NDS project through the NDS Bilateral Governance Group and acting as a communication point to other relevant stakeholders on the survey’s development

17. A schedule of deliverables required from each Party to achieve the work programme of NDS for the period 2025-2029 is shown in Appendix 1. Each party recognises the interdependence of key deliverables in delivering this ambitious work programme.

Legal and Regulatory Framework

18. Data collection and processing carried out by the CSO in the conduct of a National Disability Survey (NDS) will be done in accordance with the Statistics Act, 1993, the Data Protection Acts 1988-2018, the General Data Protection Regulation, EU law and in accordance with the CSO’s Code of Practice, in particular its protocol on data matching where one or more datasets originate from outside of the CSO.
19. The collection and processing of NDS data is covered by, inter alia, the following provisions:

a) Section 13 of the Statistics Act, 1993, concerning the statistical independence of the Director General of the CSO;
b) Sections 30 and 31 of the Statistics Act, 1993 concerning the use of the records of public authorities for statistical purposes;
c) Sections 32 and 33 of the Statistics Act, 1993, concerning the protection of information;
d) Section 24(2) of the Statistics Act, 1993 (as amended by Section 178 of the Data Protection Act), concerning the provision of information to the CSO;
e) Article 6(1)(e) of the General Data Protection Regulation;
f) Article 9(2)(j) of the General Data Protection Regulation;
g) Article 89 of the General Data Protection Regulation;
h) Section 42 of the Data Protection Act 2018;
i) Section 45 of the Data Protection Act 2018;
j) Section 54(c) of the Data Protection Act 2018.

20. The Statistics Act, 1993 provides for the Director General of the CSO to:

a) Carry out “…the collection, compilation, extraction and dissemination for statistical purposes of information relating to economic, social and general activities and conditions in the State” (Section 10(1))
b) “Assess the statistical potential of the records maintained by public authorities and, in conjunction with them, to ensure that this potential is realised in so far as resources permit” (Section 10(2))
c) “Make arrangements with other public authorities and persons for the collection, compilation, extraction or dissemination of information for statistical purposes” (Section 11(1))
d) “Invite any person or undertaking to—(a) complete a form, questionnaire or other record, (b) answer any questions, (c) provide any information or records” (Section 24)
e) “Request any public authority to: (a) allow officers of statistics at all reasonable times to have access to, inspect and take copies of or extracts from any records in its charge, and (b) provide the Office, if any such officer so requires, with copies or extracts from any such record” (Section 30(1)).

21. Section 13 of the Act provides that “The Director General shall have the sole responsibility for and be independent in the exercise of the functions of deciding— (a) the statistical methodology and professional statistical standards used by the Office; (b) the content of statistical releases and publications issued by the Office; and (c) the timing and methods of dissemination of statistics compiled by the Office”.

Data breaches

22. In the event of a breach relating to the NDS survey data the CSO will refer to their own data breach procedures and may report the breach to the Data Protection Commission as appropriate. CSO will inform the NDS Bilateral Governance Group for their own information. The DCDE will not be held responsible for any loss, damage, or injury caused as a result of such a breach.
23. Also, the CSO will inform the DCDE through the NDS Bilateral Governance Group, in advance, of any decision to issue a public statement in relation to the breach. Similarly, the DCDE will inform the CSO, through the NDS Bilateral Governance Group, in advance, of any decision to issue a public statement in relation to the breach.
24. In the event of the receipt of a request for exercise of the data subject rights, set out in Chapter III of the General Data Protection Regulation, in respect of the NDS the DCDE will direct the Data Subject to lodge the request with the CSO.

Research access to micro data & RMF Policy

25. Mechanisms to meet the need for additional research will be facilitated subject to the provisions of the Statistics Act, 1993. Access to Anonymised Microdata Files (AMFs), Researcher Microdata Files (RMFs) and protocols for release of data will be administered under the provisions of the Statistics Act, 1993 and the CSO Researcher Microdata File Policy. The mechanisms provided for under this policy conform to the highest statistical standards as well as being consistent with the Data Protection Act, 2018 and/or General Data Protection Regulation (2018).

NDS Steering Group

26. The NDS Steering Group will be established and coordinated by DCDE. This group will include key government departments, disability stakeholders, the National Disability Authority (NDA), the Economic and Social Research Institute (ESRI), and CSO. The purpose of this group is to undertake consultations with disability stakeholders, academics, and government departments during the preliminary scoping phase of the NDS (latter half of 2025).
During this timeframe the DCDE will also establish a series of sub-groups to provide input to the NDS Steering Group on the broad survey themes. Membership of these sub-groups is decided and acted upon by DCDE.
The output of the NDS Steering Group is an overview of survey data requirements (a variable list) which is shared with the CSO as a statement of user requirements for the operational phase of the NDS. The NDS Steering Group will be stood down following the completion of this output.

NDS Bilateral Governance Group

27. A DCDE and CSO Bilateral Governance Group will be convened once the survey data requirements have been produced by the NDS Steering Group. The Bilateral Governance Group will meet on a regular basis, at least quarterly, to review progress against agreed milestones and assess and agree on funding requirements as the project evolves.
28. Stakeholders may be invited to attend the Bilateral Governance Group to provide subject matter expertise, when necessary.
29. The Terms of Reference (ToR) for the Bilateral Governance Group will be as agreed between the DCDE and CSO. The ToR will cover, amongst other things, membership of the Bilateral Governance Group, frequency of meetings, and scope of the Bilateral Governance Group. Changes to the ToR must be jointly agreed by both parties and reviewed at least every two years.

Duration and Review of the Memorandum of Understanding

30. This MoU will be published on the CSO website (www.cso.ie) and the DCDE website (www.gov.ie/dcde).
31. This MoU will remain in force until a new one is entered into, or either the CSO or DCDE revoke it, or at the agreed cessation of the NDS. Depending on events, this MoU may be amended, subject to the mutual agreement of DCDE and CSO.
32. This MoU will be reviewed biennially by both the DCDE and the CSO via the NDS Bilateral Governance Group. Any changes to the MoU shall only be made with the mutual agreement of the DCDE and CSO.

Signed:

Central Statistics Office
Jennifer Banim, Director General
Date: 27/11/2025

Signed:

Dept. Children, Disability and Equality
Kevin McCarthy, Secretary General
Date: 21/11/2025