Oireachtas Joint and Select Committees
Wednesday, 13 May 2026
Joint Oireachtas Committee on Disability Matters
Data and AI in Disability: Discussion
2:00 am
Maurice Quinlivan (Limerick City, Sinn Fein)
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Apologies have been received from Senator Bradley. The purpose of today's meeting is to discuss data and AI in disability policy, practice and protections.
On behalf of the committee, I extend a warm welcome to the Health Service Executive, which is represented by Dr. Aoife O’Donohue, assistant national director, access and integration disability services; Ms Mellany McLoone, integrated health area manager, Dublin north city and west; and Mr. Tom Laffan, chief data analyst and analytics officer. From the Central Statistics Office, we have Ms Fiona O'Riordan, assistant director general and head of social statistics directorate; Dr. Katie O’Farrell, head of children and disability statistics division; Dr. John Dunne, head of health statistics division; and Dr. Aoife O’Neill.
Before we begin, I will read the note on privilege and housekeeping matters. All witnesses are reminded of the long-standing parliamentary practice to the effect that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if their statements are potentially defamatory in relation to the identifiable person or entity, they will be directed by me to discontinue their remarks. It is imperative that they comply with any such direction I may make. The evidence of witnesses physically present or who give evidence from within the parliamentary precincts is protected pursuant to both the Constitution and statute by absolute privilege.
I remind members of the constitutional requirement that, in order to participate in public meetings, they must be physically present within the confines of the Leinster House complex. Members of the committee attending remotely must do so from within the precincts of Leinster House.
I now call the witnesses to make their opening statements. They have five minutes each.
Dr. Aoife O'Donohue:
I thank the Chair and committee members for the invitation to appear before them today. I am the assistant national director within access and integration, disability services, transformation and programme co-ordination. I welcome the opportunity to discuss disability data, information systems and the wider digital and policy framework that supports fair access, effective planning and accountable delivery of disability services.
At the centre of this discussion are people with disabilities and their families. For them, timely access to the right supports, delivered in a co-ordinated way, can have a profound impact on quality of life, independence and well-being. Data and digital systems are not abstract or technical tools; they directly influence our ability to understand need, support life-course transitions, manage waiting lists and deliver services consistently and equitably across this country. The HSE recognises that disability data has historically developed across multiple services and systems, often reflecting organisational boundaries rather than people’s lived experience. Addressing this fragmentation is now a priority. Our overall direction is aligned with Sláintecare and the digital for care 2030 framework, which set out a clear ambition to harness data and digital technology to widen access, improve safety and quality, and support more integrated and person-centred care.
Accurate, timely and integrated data underpins our ability to meet statutory and policy obligations, including those arising from the UN Convention on the Rights of Persons with Disabilities. It supports better profiling of unmet need, more effective capacity planning and clearer accountability for outcomes. It also allows us to move from retrospective reporting towards more proactive and forward-looking service planning. This is particularly important at key transition points, including the move from children services to adult services, where forward planning can make a significant difference for young people and families.
A key reform closely linked to this work is the single point of access programme. The single point of access is designed to provide a single, clear and consistent route into services, replacing fragmented and variable referral pathways that have differentiated by service type and also geography. From both an access and data perspective, single point of access is critical. It supports equitable and timely access, clearer accountability for referral acceptance and assessment, and improved system-wide visibility of demand, capacity and waiting patterns. It enables more consistent triage and prioritisation, reduces duplication and supports more integrated, person-centred care pathways. Single point of access is being developed in alignment with the community care record and wider digital infrastructure, ensuring that referral decisions and outcomes are captured in a structured and standardised way. National go live is planned for the end of June 2026.
Alongside access reform, we are strengthening the policy and governance foundations for the use of data, digital technology and artificial intelligence across health and social care. The recently published AI for care strategy sets out Ireland’s national approach to adopting artificial intelligence in a way that is ethical, safe, transparent and aligned with public values.
In the disability context, AI and advanced analytics offer opportunities to reduce manual data burden, improve data quality, identify patterns of unmet or emerging need and support more predictive and preventative planning. However, we are very clear that AI must be an enabler of better care, not a driver of decision-making in isolation. Strong governance, clinical oversight, data protection and transparency are essential to maintaining trust among service users, families and staff.
The HSE has put in place an AI implementation framework to guide the safe and responsible deployment of AI technologies, aligned with emerging regulation, including the EU AI Act, and complemented by HIQA’s forthcoming national guidance. This framework ensures that ethical considerations, bias, data quality and accountability are addressed at every stage of implementation. I want to be clear that this work is policy-led and outcomes-focused, with technology acting as an enabler of better access, safer care and more informed decision-making, rather than an end in itself.
Across disability services more broadly, we are progressing work to improve national datasets, strengthen provider reporting and better integrate information access for children’s and adult services to support planning for transitions and lifelong pathways.
The emphasis is on reducing fragmentation, improving consistency and ensuring that data is genuinely usable for decision-making at local, regional and national level.
I also want to acknowledge the professionalism and commitment of staff across disability services who have delivered services for many years within complex and, at times, outdated systems. A key objective of our data and digital reform programme is to reduce administrative burden, streamline reporting, and free up staff time so it can be focused where it matters most, on direct engagement with people who use services and their families. We are joined today by colleagues from the Central Statistics Office, with whom the HSE works closely on population level data and governance. We are very pleased to be before the committee together, reflecting the importance of collaboration across public bodies in strengthening disability data and insight.
In conclusion, while there are clear challenges arising from legacy systems and historical fragmentation, the HSE has a strong and realistic programme of reform under way. Our focus is on integrated person-centred data and digital systems that support better access, stronger accountability and improved outcomes for people with disabilities across their life course. We welcome the committee’s engagement on these issues and the opportunity to discuss them further.
Ms Fiona O'Riordan:
I thank the Chairman and members of the joint committee for the invitation to the Central Statistics Office, CSO, to attend the committee meeting to consider data and AI in disability. I would like to pass on the apologies of our director general, Jennifer Banim, who could not attend today because of a pre-existing work commitment. I am the assistant director general of the social statistics directorate in the CSO. I am joined today by my team members: Dr. Katie O’Farrell, from the children and disability division; Dr. John Dunne, from the health division; and Dr. Aoife O’Neill, the lead statistician on the Irish disability survey.
The CSO is Ireland’s national statistical institute and is an independent office as set out under the Statistics Act 1993. Our statistics services support and promote understanding and debate across Government, business and society. The CSO’s vision statement is "Independent insight for all”. We collect and publish data on disability and related areas to meet user needs, to respond to and inform a changing society and to meet regulatory requirements for data. Disability statistics provide information about the lives and experience of people living with a functional impairment, as well as the barriers and enablers they experience in undertaking and participating in daily living. Separately, we note the reference to AI in the agenda for today’s committee meeting. The CSO is currently developing its AI policy. However, AI is not currently deployed as part of our work on disability statistics.
There are four broad areas that I will cover today, namely, the census of population, the Irish health survey, the CSO health research data centre and the Irish disability survey. The census of population is held every five years and gathers data on a variety of aspects of people's lives. The census is our largest primary data collection activity, reaching every household and communal establishment in the State. The next iteration of the census in 2027 will be the first census with an online option. Census data on disability are measured by two questions about functional impairment. These questions were first included in 2002, and their wording has developed over time in consultation with key stakeholders. The questions for census 2027 have been expanded following detailed discussions with a group of subject matter experts. The question development has also been informed by engagement with sectoral representatives to ensure the expertise of people with lived experiences enhances the accessibility and inclusivity of census 2027. The census website, the paper form and the online forms have all been created with inclusivity at the heart of their design. They are compatible with a wide range of assistive technology and adhere to the EU web accessibility directive to ensure accessibility to all.
The Irish health survey is an annual survey of persons in private households, conducted since 2024. This is a general survey about the health of the population with three modules focused on health status, access to and use of health services, and health determinants. The Irish health survey will be conducted again in quarter 3 of 2026. In 2024, the CSO launched the health research data centre, which is a safe space for access to data collected by the CSO for health research purposes. The health research data centre's origins stem from the CSO's facilitation of the response to the national public health emergency in 2020. The health research data centre incorporates the governance structures that were implemented at that time.
The CSO continues to forge strong relationships with the HSE and the Department of Health and significant collaboration has taken place in recent years in sharing and reuse of data for research purposes, as well as for providing advice on data linking and standards. Groups have been set up to strengthen these relationships and include the HSE-CSO statistical liaison group and the Irish health data liaison group.
The CSO, in consultation with the Department of Children, Disability and Equality and sectoral stakeholders, is working on the Irish disability survey. This upcoming survey, last held in 2006, will capture quality data on many aspects of the lives of people with disabilities. The Irish disability survey will be collected in 2028. Data will be collected from adults and children who are living in private households and some communal establishments. This survey is currently being designed in consultation with a variety of stakeholders to ensure the data reflects the needs of people with disabilities in Ireland. The survey has several broad themes including well-being, civic and social inclusion, housing and accessibility, access to the labour market, access to transport, health and education services and assistive technology. Through meaningful stakeholder engagement in planning survey content and questionnaire development, and taking into consideration the biopsychosocial model of disability, the questions will be designed to ensure that the people who are in need of service provision are screened into the survey without making it a requirement that they identify as disabled. The Irish disability survey will collect information on the barriers and enablers of participation in various activities, and will not frame disability as inherently negative. The survey is being tested by stakeholders and will be piloted this year. Accessibility and survey mode are key design features, similar to the census, and the pilot will give insights before the main survey in 2028.
In general, CSO surveys are aligned with international practice, particularly through adoption of international standards. However, there is no national or international agreement on a specific standard for disability. This reflects the complexity of disability as a concept and the challenges in translating that complexity into a statistical survey. The national data equality strategy highlights that while data on disability is collected often, a standard definition is not in use. The Irish disability survey will play a role in the move to harmonising and standardising disability measurement across the wider public sector. We are happy to take any questions the committee may have.
Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank Ms O'Riordan. I now invite the members of the committee to put their questions. When I call members to speak I ask they adhere to the agenda items scheduled for discussion. Members have seven minutes each, which includes the response.
Ruairí Ó Murchú (Louth, Sinn Fein)
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Tá fáilte romhaibh go léir. I will start with Dr. O'Donohue. Single point of access is something that we all want to see. The main complaint of parents has been the disconnectedness of dealing with the system with everything from assessments and therapies right through to respite, and then at times not having that person just to speak to. It has led to an awful lot of the issues that exist. The biggest part is the fact of not getting the services they require. We have had a number of meetings in the last while with groups such as Before We Die and Remember Us, and those representing local authorities. When we talk about profiling and information we are talking about people who are in a service, but when it comes to them having a plan for long-term residential housing we are hearing numbers of between 2% and 10% who actually have that. What are we doing with the information that we have at the minute? At the end of June 2026 are we going to have a community care record? I assume that this is like the electronic health record. Are we going to have a system that will be more robust and more fit for purpose? It is all about garnering the information and not leaving the information in different silos within the disability services. It is also about being able to provide that service. We have heard about a 97-year-old woman who is still looking after her son who has Down's syndrome. They are circumstances where we at least need a plan to back up families but at the minute I cannot see anything other than an element of failure. I am hoping that Dr. O'Donohue can say something positive in relation to that.
Dr. Aoife O'Donohue:
As the Deputy has outlined about the single point of access, reform in disability is needed. We need to have better systems, better structures and better planning for people with disability right across their life course. The single point of access is at initial stages and it will be a reform programme over a number of months and years to improve the system. In June we are going to go live with the referrals that are coming into the children's disability network teams, CDNTs, primary care and the child and adolescent mental health services, CAMHS. They will all come through one system and they will be using one referral system. At the moment in the HSE if one was to do a referral into ourselves or even some of our other providers there are about 25 variations of referral forms. Now we have one referral form agreed and that will make it much more simple. The system then is going to be part of the community care record.
What is positive about this reform is that it will be stood up across all six regions and all IHAs. It will be a very transparent system where we will know how many referrals we are receiving day by day. We are then building on that in how we deal with those referrals, the clinical pathways and programmes. In essence, it is in line with the Sláintecare principles of ensuring integration and a timely response for the children. That element will allow the referrals for children. We will then build on that to look at areas such as respite and residential. Currently, if you or a family member are applying for respite in this country, there is such a variation in how you apply. Admission criteria to our providers can also be a challenge because it can be diagnosis specific. We have some providers who may or may not accept a child or adult who does or does not have an intellectual disability. To address that we have stood up a working group and are developing interim guidance for respite for children in quarter 2, for adults in quarter 3 and by quarter 4 this guidance will be fully developed and that will ensure consistency across the country. We have service providers-----
Ruairí Ó Murchú (Louth, Sinn Fein)
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When Dr. O'Donohue says "fully developed" does she mean it will be in operation?
Dr. Aoife O'Donohue:
Yes. That is standardising referrals into respite in how we manage those referrals and prioritise. At times there is a variation across the country, so we are improving that practice. In the national service plan in 2026, in the area of residential, we had a significant change in that we now have 72 planned residential placements. Within that there has been a-----
Ruairí Ó Murchú (Louth, Sinn Fein)
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That is still not enough.
Dr. Aoife O'Donohue:
It is absolutely not enough. It is not sufficient, and we are engaging with the Department of Children, Disability and Equality and with Ministers with regard to our estimates to ensure we can get more funding. However, for those 72, which is a change, each region has been given 12 planned placements. The focus is allowing them to integrate with section 38s, section 39s or HSE directly delivered services. We want to ensure services are planned closer to home.
Ruairí Ó Murchú (Louth, Sinn Fein)
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Are we pulling together all the information with regard to those talking about how they do not have a plan? Some have been profiled and some have not.
Dr. Aoife O'Donohue:
We are engaging with a multitude of key stakeholders, including some of those representations the Deputy has considered. The parents I met said that one of the failures was that we failed to have a plan to have a plan for that cohort or group. A lot of times the focus has been on keeping people at home and close to communities and schools, and on how that pathway leads to residential and respite. We are working on a plan with regard to how we integrate and support them. It is also supporting carer burn-out and is providing enhanced respite. Within the national service plan in 2026, we have €25 million of in-year this year and a full year effect of €30 million investment in respite. That has seen a huge progression of various models of respite, both centre based and alternative. Although it is not sufficient, we are growing what we are doing in respite and residential and we give a commitment on that.
Ruairí Ó Murchú (Louth, Sinn Fein)
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That is 100%. The problem is we are starting from the wrong place in the sense that we have those huge legacy issues of those who do not have a plan at the moment. There are also those who have a difficulty with regard to getting there. The promise is that all the information that has existed in all these silos is being drawn together and by June 2026, we will at least have a proper system in place with community care records.
Ruairí Ó Murchú (Louth, Sinn Fein)
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That is only children, and then it is going to be built upon.
Ms Mellany McLoone:
I will add to that from my service perspective. As I have said here previously, we have been doing single point of access for almost two years and it has definitely made a positive impact in terms of the experience of referrals for children and their families. On respite and residential, it is important to say that the local disability managers, particularly our voluntary providers, have good insight into the needs of the population.
Ruairí Ó Murchú (Louth, Sinn Fein)
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Alongside the voluntary providers we need better engagement with local authorities from the point of view of delivery.
Ms Mellany McLoone:
Absolutely, and there are some really good examples. As service providers, one of the things we are aware of is that we need to have better information and insight into families or adults who are not necessarily attending day services, who are being cared for at home and are not linked into the system. Even the case described by the Deputy is probably an example from a service point of view. Where people are accessing services, I would certainly be confident at local IHA level, but we are aware that we do not know everybody. That is the bit we have to focus on as well as those cases the Deputy described. Often, even though there has been good progress in terms of residential there are two real challenges. The first is identifying suitable premises and the second is where we need them. Identifying them is one thing, but the locations where we need them is the most important thing.
Aisling Dempsey (Meath West, Fianna Fail)
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I thank the witnesses for being here. I will start on the census. Ms O'Riordan mentioned the questions that will be coming up in census 2027. I want to get more information from her on that. Who is the CSO specifically engaging with in formulating those questions? Is the ultimate aim to start properly collecting disability data? Will the questions be based on forward planning? How are we going to gather that data? What specific questions are going to be used? When that is collected what does the CSO do with it?
Ms Fiona O'Riordan:
The questions on disability have been included in the census since 2002 and they have developed since. Every five years we set up a census advisory group where we ask stakeholders, in this case disability groups, to come along and discuss the questions. The census covers many topics and approximately two questions are dedicated to limitation or disability. It will not provide all the answers the Deputy mentioned, which is why we have now supplemented it with an Irish disability survey and the Irish health survey. However, the data we collect from the census is really rich in terms of the level of limitations that go across the population. We use them and researchers and policymakers use a lot of the data that comes from this question because it can be cross-tabulated with employment status, people in the household, etc. We will include the specific data the Deputy is looking for in the upcoming Irish disability survey because the census data is not as rich as the data she suggests is required. The data in the census is comprehensive but the census is a blunt instrument, so we need to do more work on answering the questions required. Hence, that is the reason we are doing the disability survey in 2028.
Aisling Dempsey (Meath West, Fianna Fail)
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What is the general survey done annually?
Aisling Dempsey (Meath West, Fianna Fail)
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Okay. That is broad as well.
Ms Fiona O'Riordan:
Yes. That is more about health, but there are modules on different access to services, etc. The people we engage with for the Irish disability survey are a whole group of stakeholders. There has been large engagement for the Irish disability survey with a large number of NGOs, and DPOs have been involved as well in the context of lived experience. We can say a lot more about it, but that is where we are going.
Aisling Dempsey (Meath West, Fianna Fail)
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I thank Ms O'Riordan. I also thank Dr. O'Donohue for her opening statement. I suppose these systems will be forever evolving and improving. At what point does she expect that digital tech and AI will be fully implemented across the HSE and operational across all the sectors, so we will be on a uniform path across the regions?
Mr. Tom Laffan:
The HSE is committed to driving forward with digital transformation and the roll-out of digital technology across the entire landscape. We launched our digital for care framework in 2020. In parallel we launched a digital implementation framework that outlines some of the key transformation improvements that work, which we intend and plan to drive forward with. We have already started that. A lot of this is centred around and focused purely on patient enablement, and putting the patient and the public at the centre of what we are trying to do.
We are focusing on how we enable our workforce with the right tools and digital capacity and learning. We look at the data services that we need and understand are required to be able to connect and link all our systems together. We need to look to build on some of the foundational elements that we know are not in place. We know we are playing catch-up in some cases, and, as Dr. O'Donohue outlined, we are coming from a place where a number of different solutions are in place. They have been in place for quite some time. We know we have quite a lot of processes that collect data manually. This information is collected on older systems and they are not connected. We need to move to a space where we are collecting data in a standardised way. When we collect that data, we need to know that everyone is collecting it with the same understanding and meaning. We know we can then connect that data across our different care pathways to enable us to get a better understanding of the care. Even as we hand care over from one provider to another, they will all have visibility of the care pathway and an understanding of the key clinical information required to provide the care to their patients.
Some of the work is under way. We launched the HSE Health App last year and that has been really positive. We have had a really good uptake from the public. This is providing the public and us with access into our own information. There is access to information on appointments and waiting lists, the option to upload our own medication information and signposting in terms of health information and where to get more information. We are continuing to build on that, and we can see the growth in the numbers of the public looking to get access to the app. From our perspective, that is really positive. It is returning control back to the public, to the patient and to us in terms of what information we want to access.
When we look at the clinical environment, we have launched the shared care record programme of work. It is live on a pilot basis in the south east, where we are now providing access to a summary clinical care record for our clinicians. If care is being provided across a number of different regions, it will be possible to access that summary care record regardless of the setting. We are building, therefore, on data that we are sourcing from existing systems. Some key, core fundamentals do have to be in place. For example, we need to be able to readily identify a person and be assured that when we consolidate that person’s information so we can present it as a clinical summary, that we know we are presenting it for the right patient. There is a key focus on data privacy, data security and data protection. There is a real focus here on ensuring we are trying to present the information in a consistent and safe way, and in a better way than we were doing before.
We know we are coming from a place where there is a lot of work to be done. There are a lot of really good examples of progress made, and Dr. O’Donohue alluded to those, in terms of the community care record single point of access. We are incrementally building and not waiting for the electronic health care record, which is going to be our single longitudinal record of patients and patient care. A lot of the work we are doing now involves getting ourselves ready. It is also about educating our own staff and workforce and bringing them to the point where they understand that we need to collect data in a better and standardised way and that we need to standardise our process. The single point of access is an example of doing that ahead of what might be larger solutions. We do need to be mindful, however, that change is difficult for the organisation. That is something we will work on in partnership with our providers, patients, public panels and across our workforce. I thank the committee.
Aisling Dempsey (Meath West, Fianna Fail)
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I thank Mr. Laffan.
Séamus Healy (Tipperary South, Independent)
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I thank the witnesses for their presentations. Of course, we all know that the real difficulty in this area is the multitude of agencies, and the sections of agencies, involved in disabilities services, all with their own systems, databases and whatever. In many cases, they are not speaking to one another. This means the single point of access is hugely important.
I would like to get some clarification on it. It is to go live in 2026. What does this mean? Does it mean it will be going live fully or will there be a lead-in time? If there is, how long will that take? Will it cover all the various areas? Will it start with things like assessments of need, school places and the volume of school places necessary, arising from the data that exists? Will it address the question of respite care, the necessity for respite care and the number of respite places that would ideally be available, as well as the number of residential places available? Does it feed into addressing all those questions? Will it give a base for policy decisions in relation to the number of these respite, residential and school places available? Will it cover all those areas? If the single point of access system does not go live fully in 2026, and I am assuming it will not, how long will that whole process take? When will we be in a position to say we have gone most of the way on it?
Turning to the Central Statistics Office, there is a pilot of the disability survey this year. What does that mean? Are there numbers involved in that undertaking? Is it a particular number of people, such as 1,000 people, 10,000 people or whatever number of people it might be? The actual survey is to take place in 2028, which is 20 years after the previous survey. How will that tie in, or will it tie in, with the HSE’s database that is going to go live?
Dr. Aoife O'Donohue:
I assure the Deputy that the single point of access is a staged improvement of what we are doing. The focus initially in June, and from there forward, will be on referrals. It is on how we accept referrals, how we monitor them, how we have transparency in relation to them and how we support them going through the system. That system, then, will be developed further to include the respite and residential areas. Ms McLoone will give an oversight from an operations perspective.
Ms Mellany McLoone:
We have been doing manual single point of access for almost the past two years. First, it will only relate to children, but it will relate to all children and not just children who access disability services. It will also give us information regarding children referred to our child and adolescent psychiatry service and to primary care.
I will comment on what the information will allow us to do. Even if I take our own health region, based on the work we have done over the past two years, the information has allowed us to do an estimate of the number of children availing of a CDNT service who require respite services. Not everyone who avails of a CDNT service requires respite, but this information has allowed us to make a prediction based on it. As a health region, we have developed a capital plan that sets out what we know our requirements for children’s respite services are going to be over the next five to ten years. We have a plan in place and we are working with HSE estates regarding its implementation.
Similarly, in relation to accessing residential services, as a general rule of thumb, we try to avoid placing children in residential services if they are aged under 12. Our ambition is to try to keep them at home for as long as possible. One of the enablers to do that is access to regular and reliable respite services. As we grow and develop, it is normally that requirement for residential services that allows us to plan, because it is particularly around the late teen years, when children hit 15, 16 and 17, that there is a requirement.
As Dr. O’Donohue said, it is absolutely the start of a journey. Even based on our experience of doing it over the last two years, it has informed some of our decision-making in the development of our respite and residential services. As she also said though, it is the only start of a process and certainly not the end of it.
Dr. Katie O'Farrell:
I thank the Deputy so much for his question. In relation to his query on the Irish disability survey, the pilot will start towards the end of this year and we will also undertake piloting into 2027. Piloting serves different purposes.
We think of it as a technical rehearsal of the main event. It helps us to understand how the instrument performs in the field, what respondents think of the questions, how the survey flows and interviewer feedback. There are lots of elements to it.
We are looking at a sample of about 2,000, informed by sample size calculations from our colleagues in the methodology division in the CSO. That is a sufficient number of respondents to give us a good idea of how the instrument performs in a live environment. The main survey will run in 2028. The reason is it will take advantage of census 2027 as the most up-to-date population level data set for the country. We will use census 2027 as the sample framing for the Irish disability survey.
We are looking at approaching about 40,000 individuals to take part in the Irish disability survey, which makes it one of the largest household surveys the CSO will undertake. The learnings from the pilot inform the design of the main survey. It is a really complex area. It is important we take our time and get it right so the pilot is timed to maximise the learnings that can be built into the main design.
The Deputy also asked about data linkage and maximising the data available from the HSE. A principle of the CSO is that we reduce respondent burden as much as possible. We ask you less but we tell your more. We are undertaking a full review of what we call administrative data sources, data available from other Government Departments and the HSE to see what data we can bring in from those sources so we can reduce the survey content. Linkage at individual level is facilitated by the PPSN. Once an administrative data source has PPSN at record level, it means we can link to our survey data returns and produce a much richer data set than through primary data collection alone.
Maurice Quinlivan (Limerick City, Sinn Fein)
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Before we proceed, I ask the HSE to clarify if the single point of access going live in June is for referrals.
Maurice Quinlivan (Limerick City, Sinn Fein)
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Is that for new referrals or will old referrals be on that system as well?
Maurice Quinlivan (Limerick City, Sinn Fein)
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We are starting from scratch on that one.
Maurice Quinlivan (Limerick City, Sinn Fein)
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When it is up and running it will continue to be added to.
Maurice Quinlivan (Limerick City, Sinn Fein)
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If there is a referral in July, it will definitely be on that system.
Maurice Quinlivan (Limerick City, Sinn Fein)
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A referral from December may not be.
Gillian Toole (Meath East, Independent)
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I thank the witnesses for meeting us. I thank them for their opening statements and additional briefing notes, which are also highly informative. I appreciate they would not have been able to cover it all in five minutes, so it is great to have them. I have a frustration, to be honest. The most recent specific disability survey was in 2006. I am open to correction but I understand Sláintecare has been in place for approximately ten years. The phrase to use here is "fragmentation". Why did the light bulb suddenly go off? Why did it take so long to realise the need to capture information on the needs of people with disabilities, co-ordinate that and link it to service delivery? I appreciate some of the witnesses were not there in the earlier stages.
I think both the HSE and the CSO stated that there is no single definition of disability but Ireland ratified the UNCRPD in 2018 and there is a comprehensive definition of disability there. That is probably the best starting point and common ground. Disability is defined as "physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder [persons'] full and effective participation in society on an equal basis." The categories for data capture are quite clearly laid out.
I will try not to duplicate colleagues' questions. The single point of access is to go live in four or five weeks. What type of advertising and promotion of the availability of that to parents, schools, public health nurses, GPs, etc., will take place? It is eagerly anticipated by everybody. Who will input and analyse the data at the back end? Currently, therapists interview, gather information and upload. Is there an administration team attached to each regional health area, RHA? Will things be on time and on budget?
I am sure the witnesses know we recently completed pre-legislative scrutiny of a Bill on assessment of need. Will that piece need to be amended? I think it opened up in April, yet we have not gone through the amendment to the 2005 Act. Will there be a need to go back to that?
Dr. Aoife O'Donohue:
To give the Deputy assurance, we engaged with parents last June. One of their frustrations was fragmentation, the lack of clarity on who they should go to and referrals being sent in and then hearing they are not suitable for this or that team. We have been working on it for over a year. We now have a national oversight group for the single point of access, which has representation from all the regions, our clinical teams and key stakeholders, including technology and people who are change agents and will influence how we do this right.
We also have six regions and each has a local implementation group for the single point of access. That includes direct feedback to the regional executive officers, REOs, who are the RHA managers. All of them have taken a significant leadership role in ensuring this happens. Everyone sees a huge benefit in it but it is a cultural change in the way we do things. Each region developed a significant, very detailed implementation plan on single point of access and where we are progressing. It is about having the seven key principles we outlined around what we are working towards and building that technology. Our colleagues in technology have been integrating and meeting and they have had a huge number of briefings. They have had a lot of in-depth detail to figure out how it will actually work for children and parents to have access.
To assure any parent listening today, the system and referral system are very user-friendly. We designed it that way. Our communications team has done a lot of testing to ensure it is a really good system and to build on its visibility. It is also about training our staff, so who will deal with it. Each of the regions has a plan around where a referral goes once it comes in. For most of the referrals, it will be a simple matter of allocating them to either primary care, a CDNT or the CAMHS team and the person will be dealt with appropriately there. There are some children who may need input from variations of those teams. It could be that the child needs support from CAMHS and a CDNT which allows that to happen.
Gillian Toole (Meath East, Independent)
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I am sorry to interrupt. Following the signposting, how will therapists be recruited? If people are on different pathways, how will the resourcing be achieved in parallel in order that we do not end with the funnel being jammed?
Ms Mellany McLoone:
It is a huge achievement that we have a single standardised referral form that every healthcare professional in the country is using. It is also important, particularly in relation to CAMHS, that the HSE have a requirement to ensure all urgent referrals to CAMHS are done within a very short window. Our process for the single point of access facilitates and enables that. As a general rule, the single point of access will initially be an administrative function. Where the referral will go will be based on where the child lives. Across the country, we have 96 networks which comprise services for children in primary care, disabilities and child and adolescent psychiatry.
Based on our experience, between 85% and 90% of the referrals we get are very straightforward and simple. Children need occupational therapy, OT, speech and language therapy, SLT, or physiotherapy within primary care.
Where a referral has multiple needs, under the national access policy, each network, which is geographical, has an integrated children's forum which comprises healthcare professionals from each of the different specialties, be it CAMHS, disabilities or primary care. They all sit down and discuss the case based on the referral that has come in. If there is any additional information required, that will all be sourced before the clinical meeting but the clinical decision-making regarding the case is made by the relevant health and social care professionals. From the experience in our region over the past number of years, a lot of that is around developing relationships of trust whereby disabilities colleagues will say they might lead the referral initially but if they need support from CAMHS or whatever they will come in. Our general experience has been that has worked very well over the past two years.
Gillian Toole (Meath East, Independent)
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I would still press the question as to how the recruitment is to meet the need. I know there is primarily the admin piece. I refer to the anxiety, anger and fear of parents. I would speak even just to County Meath, where disability services teams are doing phenomenal work but they are under enormous pressure, as are parents. The technology is fantastic but in we need humans to deliver the support and the service. AI will not replace person-to-person service.
Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank Ms McLoone. Do the CSO representatives want to come in briefly on that?
Dr. Aoife O'Neill:
I will come in on the Deputy's question on the definition of disability. She is correct on there being a definition within the UNCRPD. Where the challenge lies for the CSO is measuring that statistically. There is not a single definition in terms of a question set for disability when measuring it statistically. Across the CSO surveys we use the global activity limitation indicator, GALI, which is across nearly all of our European regulatory surveys. We also have the Washington Group short set, and adaptions, the adaption being the census question, as well as another question set called the Budapest initiative, which is in our European health information survey. That is really where the challenge lies when measuring, or defining, disability for a statistical collection.
Tom Clonan (Independent)
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The witnesses are all very welcome here this morning. There are some familiar faces as we all get to know each other. I will start with the CSO representatives and congratulate them and their colleagues in the National Archives on the 1926 census going online. I can only imagine over the past 30 years the dynamic pace of change in Ireland in our demographic profiles and everything, such as diversity. It is an amazing space to be in. I am very heartened to hear, if I understood correctly, in terms of the disability survey pilot and then the actual disability survey itself, that the CSO is doing a combination of qualitative and quantitative approaches. One of the CSO representatives mentioned speaking to the lived experience of disability. In relation to the 2,000 respondents in the pilots and the 40,000 individuals, is that by survey or will the CSO sit down and have face-to-face interviews with people? How will that work? That is my first question. Is it a purely positivistic exercise or does the CSO try to delve into the phenomenological? Does the CSO have the resources to do that?
We have almost 60,000 disabled citizens over the age of 25 forced to live at home with elderly parents who are their carers. I do not know whether the CSO representatives can answer this but are those rates of inappropriate placement and a lack of autonomy and access to independent living in accessible accommodation consistent in the broader European context? Do the CSO representatives have any comment or observation on that? If they have a go at answering those questions, I will go to the HSE when we have about three and a half minutes left.
Ms Fiona O'Riordan:
I will start with the carers. We ask about the carers in the census but I cannot answer the Senator's question, is the honest answer, because we are an organisation of standards and classifications and the question on carers is not a standard one in the European question set. We can come back to the Senator to see if there is any comparable answer about carers. We get a lot of questions about carers. We included in our other surveys - the labour force survey for example - about the number of carers so we do publish some data nationally about carers. We can give the Senator more information about that.
Tom Clonan (Independent)
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I suspect we are behind the curve. A 29-year-old postgraduate student from one of the northern states in Germany came to Leinster House to visit me. As soon as she turned 18 in her municipality the federal state in Germany had accessible accommodation for her and a 24-hour care package. She came to Dublin with two carers. I call her the girl from the future. We are so far out of step with that kind of concept. It is rights-based in Germany. I have my suspicions regarding the level of adults forced to live at home with elderly parents caring for them. I am about to enter that category with my own son next year. In the broader social context, we have had presentations here from European agencies and I think we are completely out of step. I would be interested to hear if Ms O'Riordan's colleagues who gather national census statistics have a view on that.
We are really running out of time but ,on the phenomenological aspect of things, does the CSO interview disabled citizens and carers or is it by survey only?
Dr. Aoife O'Neill:
In terms of the Irish disability survey, the questionnaire would be predominantly quantitative but we had a recommendation during the consultation phase for a qualitative element. We are still in development of that question and how that will look on the survey.
Tom Clonan (Independent)
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As an academic who specialised in that area for the 22 years before I got elected, I know the literature is very clear on this. For complex human situations you have to have a qualitative and quantitative mix. If there is an over-emphasis on the quantitative you will not get to the actual meaning for people in their lives. I do not mean to be nihilistic but the lived experience here is not great. That would perhaps communicate a sense of urgency on the part of the people responsible for managing it. My apologies for cutting Dr. O'Neill short.
In regard to the HSE, I am delighted to see CHI has come under its remit. I do not know if the representatives can answer these questions today but I ask them to undertake to write to the committee secretariat and give me the answers to these questions. These are questions I put to the chief executive and the senior leadership team of CHI a number of weeks ago, at the health committee. Deputy Daly was there when I asked these questions. The children's hospital will be the first fully digital hospital. That is fantastic. All eyes in the HSE must be on this new and wonderful development. I note the chief information officer of CHI is also a full professor of health economics in UCD. As an academic, I know that a full professorship is a very onerous and time-consuming task. You have to chase funding and there are publication and research outputs. I cannot understand how a full professor of health informatics in UCD could also be the chief information officer of CHI. I asked the chief executive of CHI whether that person was on secondment or did they have two fully-paid salaries and two fully-paid jobs in the public service. She said she did not know, which in and of itself is quite extraordinary. Could the HSE representatives find out and let me know because I am aware of another full professor in another university who is also-----
Maurice Quinlivan (Limerick City, Sinn Fein)
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This might not be a question for the people who are here this morning. In fairness, they do not have to answer that right now.
Tom Clonan (Independent)
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Well it is because it impacts directly on disabled children because-----
Maurice Quinlivan (Limerick City, Sinn Fein)
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I understand that.
Tom Clonan (Independent)
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Before the disability committee we had representatives of CHI. I will run over my time now. Basically, the head of governance and the clinical team purported not to know what the statistics were in relation to children who had not been able to avail of surgery before they timed out and went into adult services. Dr. Goldman said here that it is impossible to know. The concept of a medical record goes back thousands and thousands of years. Of course it is possible to know. I am deeply concerned and I am sorry to land all of this on the witnesses because I know they probably cannot answer these questions but I ask that they write to the committee and let us know whether the chief information officer of this roll-out of the first digital hospital in Ireland is also a full time professor in UCD.
Does this person receive two salaries? How were they recruited and what was the recruitment process? There is a similar situation with a full professor of psychology at Maynooth University who is involved in CDNTs with very suboptimal outcomes?
My final question then is-----
Maurice Quinlivan (Limerick City, Sinn Fein)
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I understand where the Senator is coming from but he is asking the wrong people the question.
Tom Clonan (Independent)
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I disagree. This is the senior leadership team in the HSE. They have a view into disability. I cannot get answers from the CEO of CHI so, given that the questions come under the remit of the HSE and given that there is a significant disability component or cohort in the move to-----
Maurice Quinlivan (Limerick City, Sinn Fein)
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In fairness-----
Tom Clonan (Independent)
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For example-----
Maurice Quinlivan (Limerick City, Sinn Fein)
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The Senator is over time anyway.
Tom Clonan (Independent)
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I am over time because of the Cathaoirleach's interruptions.
Maurice Quinlivan (Limerick City, Sinn Fein)
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Not really. The Senator did not stop talking when I was-----
Tom Clonan (Independent)
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The Cathaoirleach has to allow me the extra time if he looks at the Standing Orders.
Maurice Quinlivan (Limerick City, Sinn Fein)
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I have to say-----
Tom Clonan (Independent)
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One of the decisions that was made was to have the IT team off-site, away from the new children's hospital. Having the IT team off-site is unheard of in international children's hospitals or any hospital so these are decisions that are being made by somebody who on paper, it would seem, holds two posts. If the witnesses cannot answer that question today, could they commit to write to-----
Maurice Quinlivan (Limerick City, Sinn Fein)
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They have no time to answer the question, so we are moving on.
Martin Daly (Roscommon-Galway, Fianna Fail)
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I am sorry I am late. I was next door attending a meeting of the health committee.
We are talking about data, AI and disability but there is a broader question about data within our system. It was reported again in the news today that Ireland is one of the worst performers in the European Union in terms of the digitalisation of our healthcare systems. That is a matter of fact. The target in the EU 2030 Digital Compass is that every citizen in the European Union will have a digitalised health record. Ireland is not just slightly above or below the line; it is simply off the chart in terms of digital digitalisation of our health service. When one looks at the graphs, one has to go searching for Ireland because it is so far off beam. Places like Malta, Estonia, Latvia and Slovenia, all of which are small countries like us so there are no excuses, have completely digitalised their health services, have full patient records and have paperless systems. Parts of our system, such as general practice in which, interestingly, digitalisation was funded by GPs themselves because it was in their interest to digitalise their systems, have been fully digitalised for almost 25 years. That is a fact and we know that from the chronic disease management programmes because in order to participate in that, which 97% of GPs have done, one has to be fully digitalised and be able to transfer electronic information and returns to the HSE.
What are the plans to digitalise our health services and why are we so far behind? In a previous role in a union, I spent ten years talking about a person identifier. I spoke to one assistant secretary in the Department of Health and when we had a meeting ten years later, we were still talking about the same thing. That is about 15 years ago. We have moved on but not a lot.
During Covid, when we were forced to come up with solutions in a national crisis, we were able to do that and then the foot came off the pedal again. Will we be able to meet our European Union obligations under the EU 2030 Digital Compass concerning the digitalisation of our health service by 2030? It is a simple question that applies to disability, which I will deal with in a minute, if I have time. This is a really fundamental question in a country that is the centre of information technology in Europe and perhaps the world.
Mr. Tom Laffan:
In 2024, the HSE published our Digital for Care strategy and a digital implementation framework along with that. In that strategy, there is definitely a clear recognition that we are behind the curve and behind where we want to be in terms of the digitalisation of our systems and in our capability across the organisation. We know there are some really good examples of work that has progressed. We have close collaboration with GPs, the GP practice community and the vendors in trying to integrate the well-developed systems that GPs have, the way they record and the way we integrate with GP practice management systems. That has been a really positive example, again involving the use of the individual health identifier, the referrals process and now the linking back in directly with GP systems into the single point of access. It is a really positive move.
Martin Daly (Roscommon-Galway, Fianna Fail)
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As a GP, if I send an electronic referral to a hospital system - I can only do that in some sections of community care - what happens then? Is it true that it is printed off in a physical copy and passed around the hospital?
Martin Daly (Roscommon-Galway, Fianna Fail)
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Does that still happen?
Martin Daly (Roscommon-Galway, Fianna Fail)
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I can tell Mr. Laffan what the answer is. It still happens in HSE West and North West. A physical copy is printed off. We are talking about AI here. I do not know why because AI is in another aeon. Someone physically goes around to an office and hands in something that has been sent electronically. In some services, such as CAMHS, we have been told that it is not possible to do it through a referral from Healthlink and that the instructions have been given to GPs. They have gone to so much trouble, they will reject a referral from Healthlink and then tell people to come back, resubmit a referral and send it by a different email address. The system is chaotic.
Mr. Tom Laffan:
It is a challenge in some cases. In itself, the referral from an electronic perspective has to be able to integrate and seamlessly move from one system to the next. Because we have different systems across our environment and our service providers, in some cases, it is difficult to enable that-----
Martin Daly (Roscommon-Galway, Fianna Fail)
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I do not mean to be rude because I just want the answers. Mr. Laffan has just made the point that there are different systems. Is it true that St. James's Hospital has a different information system from the system in the new children's hospital?
Martin Daly (Roscommon-Galway, Fianna Fail)
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It is either "Yes" or "No". Will there be a different system in the new children's hospital from the system in St. James's Hospital? It is "Yes" or "No". I know the answer.
Martin Daly (Roscommon-Galway, Fianna Fail)
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I am not listening to that. With all due respect, I know what the answer is. The answer is "Yes". There are two different systems. There is a system in St. James's Hospital - I am not going to name the systems - and there is a new system in the children's hospital. What I cannot understand is the fact that nobody has explained why this is the case and there is no suggestion that there be interoperability. Is that true? The first question is whether there are two different systems. If Mr. Laffan cannot answer that question, there is no point in my asking it.
Martin Daly (Roscommon-Galway, Fianna Fail)
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That is fine so the answer is "Yes". There are two different systems. Is there interoperability?
Martin Daly (Roscommon-Galway, Fianna Fail)
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Why are there two different systems on the same site?
Martin Daly (Roscommon-Galway, Fianna Fail)
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Will anyone explain to us why this new system was chosen because there seems to be a veil of secrecy, which comes under the guise of commercial sensitivity, around why it was chosen? That is my final point. Mr. Laffan was unable to answer the question "Yes" or "No". It was a very simple question. This is not personal but this is part of the system. We cannot get straight answers on these issues.
Keira Keogh (Mayo, Fine Gael)
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I welcome the witnesses. As somebody said, there are many familiar faces here again. Regarding the single point of access, it is really exciting that we are getting close to its launch and it is going to make a huge difference. If somebody is brought into that single point of access and it is decided that the best place for them is primary care or CAMHS and then when they get to primary care, it turns out that they have more complex needs or if they get to CAMHS, it turns out that they have ADHD and a pending autism diagnosis, what will be the referral path back? Is it still single point? What does that look like?
Ms Mellany McLoone:
I might take that. As I mentioned, within each network, which includes both primary care disabilities in children and adolescents, we have integrated children's forums under the national access policy. If a child develops additional needs from when they were first referred, that case is brought by the health and social care professionals to the integrated children's forums, which sit down and discuss the case to decide what additional supports that child might need. They do not go back in through the single point, provided the child is currently live and active in care. If a child was referred through and they got primary care such as SLT, but it was three years ago, they are going to have to go back in again. Once a child is currently on a waiting list or in receipt of treatment, they will go through the forums in place.
Keira Keogh (Mayo, Fine Gael)
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For example, I know of a child who is receiving OT from primary care, and it is going well, but the child is on a waiting list for psychology and is in need of more support. There is no key worker in primary care because it is not that CDNT approach; it is different. When I make that referral, and I do not have any referral for extra support from the parent, is it the OT in that case who should be going back for more support for that child?
Keira Keogh (Mayo, Fine Gael)
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It is becoming apparent that the child probably needs a CDNT team because there are complex needs. In the beginning, those needs may not have come to the fore but they are now. The parent has come to me. I understand the system a bit better given my background. However, I have then got push-back saying, "Well, we have no referral in from the parent for more support", but she has come to me for that. That integration is active now. In that case, should the OT be flagging that this child should be in a CDNT, or what is the process?
Keira Keogh (Mayo, Fine Gael)
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I am only using it as an example-----
Keira Keogh (Mayo, Fine Gael)
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-----because it is a real-life example. I have brought a query and been told the parents have not referred the child, but I am saying he is already in the system.
Keira Keogh (Mayo, Fine Gael)
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Is there going to be a timeframe where somebody is referred to a service, based on the best advice at the time, where there will be a chance to re-refer them to another service or have two services happen at the same time?
Keira Keogh (Mayo, Fine Gael)
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My next question is for Mr. Laffan on the digital for care strategy. Maybe it is my research, but it is hard to find clear KPIs and timelines for that strategy. What engagement has there been with DPOs or disability advocates within that strategy? I know there has been a wider consultation with stakeholders, but specifically for disability.
Mr. Tom Laffan:
The strategy and the framework were drafted over a period with significant engagement across many stakeholders. It was published in 2024 and included patient-public representative bodies. I do not have the full list to hand, but in any case it was definitely broad to get that full understanding of the ask from patient representative bodies. That has fed into the strategy of outlining the real need and desire for the public and patient to have access to their own data, to better services and to be digitally enabled. We have a continuous engagement now as part of the digital for care strategy and the restructuring of how we transform our healthcare using digital technology.
We are in the process of setting up a patient-public advisory panel that will feed into, on a strategic level, the ongoing programmes of work we have under way. They are already feeding into the health app and the shared care record process. We have significant representation across our key programmes of work from those patient-public panels to give some direct input into what they would expect from a service and the delivery of a solution. It is an ongoing-----
Keira Keogh (Mayo, Fine Gael)
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I might quickly pivot to the CSO for my last 40 seconds. On next year's census, we obviously have a lot of people waiting for an assessment of need and there is a process there to try to streamline it. Is there a way to capture disability for people who are awaiting a diagnosis?
Ms Fiona O'Riordan:
No, there is not. The census is too broad to get to that level of detail. That would be covered more in the Irish disability survey that we will hold in 2028 - something similar to that - around services.
Margaret Murphy O'Mahony (Fianna Fail)
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I welcome everyone here this morning. Apologies for slipping in and out; I have about 101 things on this morning. I thank everyone for their opening statements.
My first question is for the HSE. I am always very concerned about people moving from child to adult services. Many things can go wrong. I know many things can go right, but it is often a time when things can go very wrong. What actions is the HSE taking to ensure seamless data sharing between the two set-ups, so at least that part goes seamlessly?
Dr. Aoife O'Donohue:
We have developed the CDNTIMS, which is the children's disability network team information management system, which has now gone live in 88 of our 93 teams. This is a very good resource that gives the oversight of assessments, interventions and support, and is based on a family-centred model. What we have to do now is transition the information that is there to adult services. At present, there is no direct integration between them and where their adult provider will be, but the information is shared in a very concise way. That commences when the child goes into their final year in school in September. The profiling happens for day service placement and support and what that placement looks like, but what has come as an issue, especially for children who have more complex needs, is the need for that transition planning to happen over a two-year period.
We are looking at transitioning that in advance - it would be two years in advance. We are hoping that with the development of the community care record, all that information will be in one place and will be integrated. It does not matter if the provider is a section 38 or section 39, a HSE director or private, we will be able to support, enhance, integrate and share that information, which is critical. The CDNTIMS is a very good foundation for that information. The data is there, it is visible and is in one place. It is also easily transferable to the new service provider.
We are also integrating very closely with our schools and special schools. Significant engagement is going on regarding the child and input, which is in line with educational support services being stood up in schools. We could be delivering some therapy to children in our CDNTs, but they could also be getting support from OT and speech and language therapy, SLT, in schools. It is about how we integrate that support in a meaningful way, ultimately for parents but also for that young person who is transitioning through, to ensure there is consistency in the supports they are receiving as children into adulthood.
There is a need for enhanced funding for multidisciplinary supports for adult services. It is something we are looking at. We have what is called the YAT team, which has been very successful in ensuring a good transition from school to adult services.
Margaret Murphy O'Mahony (Fianna Fail)
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What does that stand for?
Dr. Aoife O'Donohue:
Young adults team, for accessibility supports. Ultimately, it is an OT and SLT support team, with behavioural support as well. For some people, school has been very much a constant. There is a routine there and the change from there to day services can be significant for that person. To lead to significant success, this team supports that transition from the school. They start working with the child in the school and then work with them in the day services for a number of years after. However, we need to expand that resource across the country.
Margaret Murphy O'Mahony (Fianna Fail)
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I thank Dr. O'Donohue for that answer. The CSO witnesses mentioned the data on disability it collects. How is the CSO ensuring or encouraging the data on disability it goes to a lot of trouble for and does very well in collecting will be used by policymakers and service providers to drive improvements?
Ms Fiona O'Riordan:
That is a good question. We do not have to encourage them because there is a demand from policymakers for this data. Some of the Senator's colleagues have already asked us about specific data in the census. The reason we are doing these collections - the Irish health survey, the disability survey - is that there is a data gap. The researchers, the policymakers, our colleagues in other Departments, including the Department of Health, and the HSE are looking for the data. They are eagerly waiting for it, so we will have very little encouragement to do. The data will be much sought after when it is collected.
Margaret Murphy O'Mahony (Fianna Fail)
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That is good to know. The HSE, in the opening statement, indicated AI would support planning but not drive decisions. How can it guarantee meaningful human oversight and prevent algorithmic bias in disability services?
Dr. Aoife O'Donohue:
In essence, the model of support is front-line, that is, supporting people where they are at, across communities, to live the life of their choosing. That cannot be replaced with AI. We can enhance our back-office systems with some of the AI technology that is coming but the importance of that human-to-human element is critical. As previous speakers have noted, disability is very complex and we need to deliver a support package for each person, based on their current need and what support they need, and scaffold and support them to live the life of their choosing in communities across Ireland. That will always be our objective. We value the role AI will be able to help and support us with but it will never replace humans.
Margaret Murphy O'Mahony (Fianna Fail)
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The CSO may have already touched on this. Why is AI not currently being used for planned AI uses in statistics? What safeguards will be put in place from the start?
Ms Fiona O'Riordan:
It is not used in disability in the space we are in at the moment. We do use it for other aspects of the work we do, such as the coding of occupation and industry. We have a certain amount of use of large language models, machine learning, etc. We are very conscious of any AI tools we introduce. We have a strong governance overview of it, with a very ethical lens, and we make sure we always keep the human in the loop as well. We are taking a very slow-----
Margaret Murphy O'Mahony (Fianna Fail)
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The CSO is very conscious of it.
Maurice Quinlivan (Limerick City, Sinn Fein)
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The HSE indicated that there are more than 20 forms involved in a referral and it hopes to move to just one. Can we assume there will be only one form from July onwards and all the others will be gone?
Dr. Aoife O'Donohue:
The only supplement to that, which a member referred to earlier, is the Healthlink form for GPs. At the moment, there is a direct link in for CAMHS forms. GPs would have a direct link with CAMHS, CDNTs and primary care. That is only for GPs. Everyone else will use the same form but the forms are aligned and the information is the same.
Maurice Quinlivan (Limerick City, Sinn Fein)
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Will all the other forms be gone?
Dr. Aoife O'Donohue:
Just for full transparency, the only difference is that there is an age-related form which gives specific details related to the age of the child. It is there due to GPs' time and, respectfully, their level of insight into the child. A referral will come in from the GP and that age-related form will be completed by the primary carer. In the majority of cases, it will be the parents who complete that information. That will come into the system, so we will have full oversight of all of that.
Micheál Carrigy (Longford-Westmeath, Fine Gael)
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I thank the witnesses. All that sounds great, but it has not been great in practice. That is the problem and it is why we have a shortage of therapists and are scrambling to get school places. The HSE has not properly forward planned over the years. Otherwise, we would know the demand and need, based on CSO figures and the percentage of young adults and children with varying disabilities. Age profiling and so on could all have been done in order to forward plan for the need for school places and therapists. We were scrambling to bring in extra courses at third level colleges to qualify therapists when we had hundreds of positions empty in the CDNTs because they could not be filled. The people were not available to be employed because not enough had qualified through our colleges.
The HSE has failed to forward plan. That is the cause of a lot of the problems we have with shortages of staff in disability services and trying to plan for sufficient school places. We have not forward planned based on figures that are available and could have been used, at least get ahead of the problem, where possible. That is an opinion and the HSE representatives might contradict me on it, but I am firmly of the view that because we have not forward planned, we have been struggling. Data from previous censuses could have been used to forward plan need but that was not done and it is why we are scrambling.
What will be changed or done differently in census 2027 or the national health survey in order that we will prepared and have sufficient supports and services in place for children and young adults? In my opinion, that has not happened heretofore. That is why we are where we are. People will blame the Government but it is not the Government's responsibility. That is the job of the Department and the HSE. The office analyses data but the data has not been used; otherwise we would be better prepared in advance to have better services in place.
Going forward with census 2027 and the national health survey, transitioning was mentioned. We know the number of children availing of access and inclusion, AIM, support in the early childhood care and education, ECCE, system. That data has not been used to forward plan what the need will be in the primary and post-primary education systems. What is going to change?
Dr. Aoife O'Donohue:
I can hear the Deputy's frustration. First and foremost, we have done the restructuring, in line with Sláintecare, to have six health regions. We have six regions and 20 IHAs. At the level of a population-based resource, we will have a general manager overseeing each community health area. These general managers will have oversight of the acute services, community services and children services. That is critical because they will have oversight of all the information, data and services that are there. They can also plan what services are required. My colleague Ms McLoone alluded to that regarding planning for respite.
CDNTIMS, which I have referred to a number of times, gives us a really good data source. We share that information from CDNTs and primary care with our colleagues in AIM and special education to plan in that area. That data is much more easily available now and we share it on an ongoing basis with them. Recently, there was a query on whether we had data on children aged between 18 months and two years and eight months and what the level of complexity was. We shared that in order for people to future plan.
As a health service, we are challenged every day with demographics and change for a multitude of reasons. First and foremost, there is a level of complexity and an increased prevalence in some conditions, but also adults with disabilities are living a lot longer. That is due to advances in the support and care that people are receiving. We also need to plan for that. We need to have more infrastructure development. That means supporting and enabling our section 38 and 39 services.
I acknowledge Deputy Carrigy's point that we need to have better visibility of data. Often the data was fragmented and held within various service areas. However, the advances our team in technology is delivering will bring all the information together to the point of service delivery. By working together with our colleagues in the community and education services and planning for the future, we will have a good base service. The planning we are doing is population-based. The information we get from census 2027 will be acknowledged but we have a growing population in Ireland and we need to ensure there is appropriate investment.
Micheál Carrigy (Longford-Westmeath, Fine Gael)
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That is what the census is for - to pick up what the population is. However, we have not used the data that has been there to prepare us. That is a fact. Otherwise, we would not be struggling to provide services and to have enough qualified people. The reason we do not is that we did not pre-empt the number of children with a need. We should know that from the previous censuses. I looked at census data previously and I could work out roughly how many thousand kids were going to have a need based on the number of children aged between zero and four years. I am not an economist or statistician, or anything like that. That should have been done.
Micheál Carrigy (Longford-Westmeath, Fine Gael)
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I agree it is for all aspects but this is key to the area of disability services where there is a massive shortfall because we have not forward planned.
Dr. Aoife O'Donohue:
With these enhancements in data, we will be able to do that better. The restructuring of the regions is definitely really good. Decisions and responses are made locally and the planning of services is as close to the person as possible, which is in line with what we want moving forward.
Maurice Quinlivan (Limerick City, Sinn Fein)
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Would the CSO like to comment on that?
Ms Fiona O'Riordan:
I ask my colleague Dr. Dunne to come in, but the Deputy makes a valid point about the census. The census traditionally was held every five years. Our colleague from the HSE made the point that society has changed quite significantly over the past 20 years, and never more so than since Covid. The requirement on us to reflect society is changing constantly. It is deemed now that every five years is not enough to give these population changes and projections. The CSO is trying very hard to have annual projections. We are on a trajectory with a regulation to provide annual population projections in order to try and give as many attributes about the population as we can. That is, as the Deputy said, in order to give the best information to service providers that we can in respect of people with disabilities and others, even schools, etc. I will ask Dr. Dunne to come in on our population projections.
Dr. John Dunne:
We will be working towards those detailed population estimates on an annual basis, which will contribute to planning and informing policy.
In terms of the Irish Health Survey, this is something we recognised. We felt that there was a big demand and a gap in this regard. Under EU legislation, we were only required to do it every six years, but it was something we felt we needed every year in order to help to contribute and to fill in those data gaps going forward. We are trying all the time to fill those gaps. The first instance of the survey was in 2024, and the results were released in 2025. The second iteration, namely for 2025, will be released later this month. We are also trying to align and join up with the health geographies in the HSE in all of the activity we are undertaking.
Micheál Carrigy (Longford-Westmeath, Fine Gael)
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At what level within the Departments of Education and Youth and Children, Disability and Equality are discussions taking place in respect of this data in order to make sure that those Departments are in sync regarding that information?
Dr. John Dunne:
Is that overall with the CSO or is it specific to health? Ourselves and the HSE have regular contact and we meet regularly to discuss what data needs and opportunities there are.
Micheál Carrigy (Longford-Westmeath, Fine Gael)
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How regular is regular?
Dr. John Dunne:
We meet and sit down with representatives of the HSE every two months. Behind that, there is a lot of informal communication if issues or queries arise about data, if there is a particular need or if we can do something here to fit something, if that makes sense.
Micheál Carrigy (Longford-Westmeath, Fine Gael)
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Is it similar with the Department of education?
Maurice Quinlivan (Limerick City, Sinn Fein)
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The Deputy’s time is up.
Ms Fiona O'Riordan:
We have a relationship with a lot of Departments. We are a service provider within the broader public service if entities are looking for specific data. The Irish Disability Survey is an example of that. The Department of disability has asked us to do that for it.
Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank the witnesses. That concludes the first round. We will move on to the second round, if members want to come in.
Ruairí Ó Murchú (Louth, Sinn Fein)
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If we are having a conversation in relation to what is wrong, the witnesses admitted that the information was in silos and was not necessarily shared. We have had multiple interactions at this stage as regards the issue in relation to the structure under which assessments are carried out and therapies are or are not carried out. We created a CDNT structure and moved away from in-school therapies, but we have half gone back to those. I still have a difficulty in seeing how we can recruit to every section at the same time. I say that with the best will in the world. The AON lists have gone through the roof. What the witnesses are saying does sound positive. It is only positive if it is sufficiently resourced and if we have the correct information, because then we can provide the correct services to children. We can continue to provide them as they become young adults, and even beyond that. In other words, we deal with everything from assessments and therapies right through to respite and residential care.
I imagine with the community care record that is fairly straightforward and that we are talking about some sort of text format or database. As regards interoperability, it is relatively easy. There may be different systems across the HSE, but this information should be very easily shared.
Dr. Aoife O'Donohue:
CDNTIMS system is on its own platform, and that is now going to be integrated into the community care record. We are going to explore that in September, but what we want to do is to make sure it gives enhanced usability in order that we will not reduce the functionality that we have. CDNTIMS allows clinicians to plan for appointments and ensure who attends. We have really good oversight of information. The community care record will enhance that as it migrates across.
Ruairí Ó Murchú (Louth, Sinn Fein)
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It provides all the additional information required, and that is shared with everyone. When we are talking about therapies, there probably needs to be communication on a wider level. I spoke in relation to residential care in the context of the need to have local authorities involved, but I would also say, obviously, that schools need to be involved, whether there are therapists operating in them or not. It is as simple as that.
We will be in a perfect scenario when the community care record is up and running. What do we do with those who have submitted information previously? What do we do with all the information that may be in silos around the place? When do we say we have a significant amount of the information available at a central point and that it can be shared with everyone in order that the issues can be addressed?
Dr. Aoife O'Donohue:
We use CDNTIMS to oversee it. The HSE uses it directly, but we also have ten section 38 and 39 organisations. They were coming with various different systems and data on children, and children were going into different teams as we reconfigured the CDNTs. What we did was we migrated all the data from those various systems onto CDNTIMS. That has been really welcomed. Now that information is there-----
Ruairí Ó Murchú (Louth, Sinn Fein)
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Nearly everything is there as regards-----
Dr. Aoife O'Donohue:
All that information that was there in respect of children has transitioned across. If they were in a section 39 provider and had been receiving a service since there were two or three and are now 16, all that information has migrated across. The system allows clinicians to have access to that information. It is visible there. The records for those children is there,
Ruairí Ó Murchú (Louth, Sinn Fein)
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As regards adults and doing the catch-up, where are we with that?
Dr. Aoife O'Donohue:
There is a phased implementation of the community care records. One of the first regions to go live was the mid-west. We will be looking at adults regarding rehab teams and day services. It is going to bring about really good functionality on bed capacity, which will give us really good visibility of both respite beds and residential beds; so areas where we may have a vacancy due to a death or various other issues.
Ruairí Ó Murchú (Louth, Sinn Fein)
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What will the timetable on that be?
Ruairí Ó Murchú (Louth, Sinn Fein)
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The idea is that all this information will be in the correct format by the end of 2027 and that everybody who needs access to it will have it.
Ruairí Ó Murchú (Louth, Sinn Fein)
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Right.
Ruairí Ó Murchú (Louth, Sinn Fein)
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That will mean that it will be easier to answer the questions in relation to what the need is. I accept that at times with kids it will need to be very bespoke.
Dr. Aoife O'Donohue:
To give an assurance, as we wait for the community care record, we are looking at what is called a respite platform. One thing that is really challenging is our utilisation of centre-based respite. For example in that regard, we may have commissioned a service that has four beds for respite but, due to complexity of the child or the adult involved, there may only be one or two beds utilised. The way the data was coming in was on a quarterly basis one month in arrears. For this year, it is one month in arrears. What we are going to have will be live streaming on the nightly use of respite. We will be able to identify within a particular town, county or region exactly how much centre-based respite was provided to adults or children. If that question is asked today, there is a huge administrative burden involved in answering it. The functionality to which I refer will become live and will then be built in to enhance the community care record, which is really welcome. We are not just waiting, there are many improvements happening each and every week.
Ruairí Ó Murchú (Louth, Sinn Fein)
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We need to make sure we have that information and the resourcing. I will go back to the residential piece and just throw it out there, because the witnesses will not have time to answer. I refer to the idea that at times people have, for all the obvious reasons, left services in residential care units.
Families have given out that sometimes they have not been replaced and that there are very particular issues, even in relation to decongregation.
Keira Keogh (Mayo, Fine Gael)
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Sticking with the community care records, when we get to that point - we are a good bit off - it will be fantastic. Have we already thought about the fact that different organisations are probably taking different data and how do we get that consistency? When somebody who is going to school is picked up by an after-school section 38 organisation and then might be dropped off at residential, what is that going to look like in practice?
Ms Mellany McLoone:
I might take the question in terms of the service user engagement. To be fair, there is a team working on the implementation of the community care record. They have done a phenomenal amount of work in engaging with front-line clinicians. They have looked at data on everything from primary care to disabilities, mental health, older persons and chronic disease. They have got clinicians in to describe how their system currently operates. They have done that from a national perspective all over the country. One of the single biggest challenges in agreeing the community healthcare record will be that it will be one system, one process. The definitions for everything are going to have to be the same. In many respects, the system is almost the easiest part of it. The challenge will be the cultural change that is required to get everybody to agree this is the single way that we are going to do it.
On that, the community care record, whic hMr. Laffan will speak to better than I will, is a really important enabler in implementing the one healthcare record, which is our electronic health record that Deputy Daly referred to earlier. There is a huge amount of work and in fairness to that team, they have gone the length and breadth of the country trying to get people to describe on a practical basis how they do things so that we can build our system in a way that will reflect that practical service delivery.
Keira Keogh (Mayo, Fine Gael)
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If we imagine that it is in place and that I am a personal assistant, what does the end of my shift look like? What data will the HSE collect? I worked with parents for so many years and when the children get home, the parents want to know whether their child ate well, what their mood was, what they learned, what they did and whom talked to and played with. Sometimes the data that parents wanted versus the data that people working with their children felt was important was completely misaligned. From a national perspective, what data is the HSE looking to collect and what will that look like on the ground?
Ms Mellany McLoone:
The data is different. It is a bit like what Senator Clonan was saying, even in terms of the Central Statistics Office. The data is all that core information around the person, where they live, their age, any medications, etc. What the Deputy is describing are essentially the clinical notes. It is that free piece. It is good that the Deputy raises that. We will need to do work on it. As Dr. O'Donohue might say when we are feeding back, there are huge parent and service user involvement in this. There has been an enormous improvement in how the HSE engages with service users. At all of the health regions, we have patient and service user councils now. We have people who are specifically responsible for this. They will also be used as a funnel to make sure that it is not just about what we want and that it also reflects.
Keira Keogh (Mayo, Fine Gael)
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We had a session in this committee last week where we were talking about abuse. There is huge scope here. One child could be getting a walk in after school, going to a shop and learning how to use their money independently, and there could be somebody else who is at the back of a petrol station while the personal assistant is having their lunch. There is a huge opportunity with AI when people have to upload those clinician notes on what they are doing, especially when we are moving away from congregated settings, which is absolutely the right direction, but it then leaves people in smaller groups with one-to-ones. Most people go into this line of work for the right reasons and then, unfortunately, there are a few who will abuse that kind of power imbalance. There is huge scope for AI to go through clinician notes to see a pattern if somebody is not getting that care plan followed. We often hear of people in residential placements who do not leave the house enough, etc. There is huge opportunity. Do the witnesses foresee that in any kind of timeframe?
Maurice Quinlivan (Limerick City, Sinn Fein)
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Will Ms McLoone be brief?
Ms Mellany McLoone:
Yes. We need to be careful. In relation to the implementation of AI, we have public service agreement. Huge consultation and engagement will have to take place with staff trade unions, etc. We do not want to give anybody the impression that AI will suddenly be used to monitor staff or monitor their work. That is not what this is about. AI has a role in supporting our service development. It is that; it is not Big Brother watching you. A huge amount of consultation and engagement would need to take place.
Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank Ms McLoone.
Séamus Healy (Tipperary South, Independent)
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From my point of view as a member of the committee, today's meeting is about trying to establish whether those concerned, particularly the HSE, have the data available and easily accessible in one place to ensure that we can forecast the services that are needed for the disability community. The question of the provision of those services is for another day and probably for a different set of attendees. It is for people like the senior management in the HSE and for the Department of Health, the Department of disabilities and the Ministers of the day. The real question is, are we in any way satisfied that the data is available and is freely accessible in one place so it can be used to forecast the services that are needed?
From what I have heard, we have made a good start but there is a long way to go. That is the difficulty. To what extent can this whole area be moved forward and at what pace can it be moved forward? We have had various people in here, for example parents in their 70s, 80s and 90s, caring for adult children with disabilities and probably hoping, as they themselves have said, that the children will pass on before them because they do not know where they will be cared for afterwards. To what extent can this process be fast-forwarded?
Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank the Deputy for the question. It is a really important one. Hopefully, we will have a follow-up session, maybe in September or October, to see where we are with the single point of access. Dr. O'Donohue may want to try to answer the Deputy's question.
Dr. Aoife O'Donohue:
First and foremost, we have very good visibility on our referrals of people requiring services but one area that continually is a point of pressure is residential services. There is significant pressure on our ability to, first and foremost, expand those services. Often we have been responding to a crisis or a priority 1 case. There is commitment in national service plan, NSP, 2026 and there will be a further commitment in 2027 to do more planned residential placements around that engagement with both the Department of housing and the local authorities and supporting people in a tiered approach. Not everyone with a disability needs a high-support, 24-7 HIQA service. We need to have a modelled or tiered approach to residential services.
We also need to see investment right across the life course for disability. It is around also supporting some cohorts, specifically people who develop a disability during their life. There has been a focus on under-65s who are in nursing homes. We know that is not appropriate. Many of those adults want to live in local communities but due to access to suitable housing, that can be a challenge. It is about engaging with housing at an appropriate stage but also for us as the HSE to be proactive in our engagements with our section 38 and 39 organisations to ensure that they have access to appropriate housing. There is also a need for an appropriate workforce aligned with that. There is a challenge.
For example, regarding school leavers, for 2026 we are planning for 1,400 school leavers. We know already that for 2027, we are going to have to provide 1,700 school placements, so that is a significant growth in demand. We have also seen a significant growth in home support and PA hours, so needing to provide and support people as close to home as possible, helping people remain at home and giving them that support, but also giving them access to PA hours to allow them to have access to education and employment is a clear focus for us this year and in the years ahead.
Ms Mellany McLoone:
May I come in on the issue of residential services? What is important to say as well is that the provision of residential services is far more challenging now than it was ten years ago. People have very complex needs. Before, people were happy to live together. Far more people want to live on their own now or maybe live singly. It is a highly regulated service - which it should be - but it just means that there is an ever-increasing number of people wishing to live on their own. Maybe five or ten years ago, the HSE might have been able to accommodate four people in a house, now when we are buying houses at best, we might get one or two. In terms of looking at the profile of residential services that we have available to us, how we use those now is not the same as what it was five or ten years ago. That is also an important consideration on that front.
Gillian Toole (Meath East, Independent)
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I will start with the CSO team this time, if I may. Was the Irish Health Survey 2024 retrospective? If the CSO spots a trend, can it raise a flag? I obviously do not expect interpretation of trends, but who does it notify? Is it the Department?
In the next disability survey, is it proposed to include questions about safeguarding, abuse and violation as well questions around personalised budgets? I do appreciate it is a pilot scheme, but, increasingly, we are hearing from other guests a will and preference for a personalised budget to enable a person with a disability to live independently. There is also then the personal assistance piece. Will or can questions like that be included because that is the feedback we are getting?
I also flag that Independent Living Movement Ireland has produced a discussion paper on the impacts of AI on disabled people. We can perhaps share it as it has been sent to us. The Independent Living Movement of Ireland is a disabled persons' organisation, and the paper highlights it concerns around AI and how the use of AI may be integrated.
Ms Fiona O'Riordan:
I am going to get Dr. Dunne to talk about the Irish health survey and then Dr. O'Farrell will talk about the disability survey.
Dr. John Dunne:
Those are very valid very questions and they relate to where we hope to be. The Irish health survey is a very rich survey and, as the Deputy said, we have to have a couple of years to have trends. The other thing I would say is that we have to be careful with a survey when we are interpreting changes in small numbers because of the sampling error that might come in and so forth. In terms of bringing it to the attention of people, we have arrangements in place to actually do special analysis with the Department of Health and the HSE where required. We are also very much aligning to the HSE health geographies to try to inform those, and we have consultations with the health regions teams as well on any of their requirements or analysis that they may require.
Gillian Toole (Meath East, Independent)
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I, and probably many others, attended the launch of the Irish cancer dashboard survey in the audiovisual room in Leinster House in January or February. They actually had to operate off EU data because there was no Irish data. It will be CSO's survey data that will be available going forward, and it will be timely.
There is also my query relating to the possible inclusion of questions on safeguarding, violation and abuse in the next disability strategy.
Dr. Katie O'Farrell:
We received a significant volume of data requirements from stakeholders, not all of which can reasonably be included in a survey due to respondent burden, so rather than there being aspects in relation to safeguarding or abuse violation, the closest data point that we would be able to provide would be on autonomy of choice. That came through very strongly from the DPO in particular as being something it was interested in. That cuts across housing, accessibility, transport, education and all the different survey modules.
We will have questions on discrimination across the nine grounds of equality included as well. The personalised budget is captured more in terms of whether financial constraints are one of the reasons for not being able to access a particular activity or participate in society. Personal assistants are covered in the pilot survey.
Gillian Toole (Meath East, Independent)
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I thank, Dr. O'Farrell. I am just wondering about security. Previously, we learned in the regional health forum for the north-east region that there were 20-plus different systems. Everything is now going to be distilled to probably three or four, please God. One element of those 20-plus systems was hacked in 2022, but everything was disabled for security reasons. How does the HSE envisage that security will be managed?
One of my earlier questions related to AON. Has the HSE gone ahead of what we are trying to do in this House with the pre-legislative scrutiny on AON?
Mr. Tom Laffan:
In relation to data protection and privacy and the solutions that we will develop, there is a real focus in understanding who needs to get access, what level of access and clearly defining roles. That is within the group and our services users that need to get access. It is a real significant focus, and it will continue to be the case across any of the solutions we will deploy.
Dr. Aoife O'Donohue:
On the AON note, we had a system that was actually over 20 years old overseeing the entire AON system for referrals and oversight. We have now moved that into a more user-friendly system which will have much better visibility and transparency of data. It will also be able to speak to our CDNTIMS, which is very welcome. So, there has been no change to the system, just greater visibility of data to modernise it.
Gillian Toole (Meath East, Independent)
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Can it be flexible pending any legislative changes?
Gillian Toole (Meath East, Independent)
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That is perfect. I thank, Dr. O'Donohue.
Maurice Quinlivan (Limerick City, Sinn Fein)
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That concludes our contributions for today. I thank everyone for coming and for providing their statements beforehand as it is very useful for all of us so that we can ask the proper questions. I propose that we publish the opening statements on the committee's website. Is that agreed? Agreed.
We will now go into private session to deal with housekeeping matters. Is that agreed? Agreed.