Joint Committee on Disability Matters debate -
Wednesday, 22 May 2024

Progressing Disability Services: Discussion (Resumed)

An Cathaoirleach

We have received apologies from Deputy Feighan and Senator O'Loughlin. The purpose of today's meeting is a discussion about applying evidence to the aspiration for equality in children's disability services. On behalf of the committee, I warmly welcome Dr. Noreen O'Leary, lecturer, school of population health, Royal College of Surgeons of Ireland; and Ms Geraldine Moran, assistant professor, school of allied health, University of Limerick.

Before we begin, I have a note on privilege and some housekeeping matters. All witnesses are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person or entity in such a way as to make him, her of it identifiable, or otherwise engage in speech that might be regarded as damaging the good name of the person or entity. Therefore, if witnesses statements are potentially defamatory in relation to identifying a person or entity, they will be directed to discontinue your remarks and it is imperative that they do so. Members are also reminded of the self-same long-standing parliamentary practice and that members who are joining the meeting remotely must be within the confines of Leinster House to participate in the meeting. If they are doing so, I ask that they indicate to the team beforehand before they make their contribution.

Without further ado, I call on Dr. O'Leary to make her opening statement.

Dr. Noreen O'Leary

We thank the Cathaoirleach and the committee members for the opportunity to present our review and recommendations.

Our background is that we both are CORU-registered speech and language therapists who have worked in children's disability services, both before and after reconfiguration. My experience has been over a ten-year period in early intervention and community services for school-aged children, while my colleague, Ms Geraldine Moran, has worked in a range of special schools over 15 years. We are both involved in academic research roles at present. Our impetus for this review came from our front-line experiences and deep concerns about the current and future state of children's disability services.

We analysed 28 HSE key policy and procedure documents to determine the evidence base for the progressing disability services, PDS, programme. Evidence-based practice means that we question what we do, we make decisions based on the best data available and consider its possible limits. Therefore, the aim of our review was to analyse the key documents to determine the evidence-base for PDS.

Within these key documents was a 72-page report, Report of the National Reference Group on Multidisciplinary Services for Children aged 5-to-18, that was described as the "foundation for the PDS programme's planned changes". We found that the report is not clear on how evidence from existing models of service delivery for disability services informed the development of PDS. There seemed to be an assumption that equality - giving everybody the same service - would lead to equity - giving everybody what they need based on individual needs. There is evidence that this practice has not succeeded and may have created a situation where many children have less access to services. Children are on a range of waiting on lists for services instead of the integrated system that was promised. Access can be a postcode lottery. In creating the final model underpinning PDS, it is stated in the report that the group "used fictitious scenarios to test out the proposed structure of services and determine service pathways for children." That process is confirmed in the minutes of the reference group meeting of 6 November 2008.

An unchallenged assumption of PDS within the documents reviewed was that reconfiguration in and of itself was equivalent to improving service quality and access. While reconfiguration can contribute to overall healthcare improvement, it must be combined with measures to strengthen how care is delivered, cultivate a culture of improvement and be grounded in the best available evidence. When reconfiguration lacks a robust evidence base against which to plan and evaluate the reconfiguration process, it creates a significant risk for clinical services, including for those who deliver and access them. This can be seen in the current PDS situation regarding staff retention and wait times for services. The absence of evidence-based implementation strategies likely further contributed to challenges.

A key recommendation of the Global Report on Children with Developmental Disabilities, published by the World Health Organization and UNICEF 2023, was the need to strengthen the capacity of disability services to provide inclusive and people-centred evidence-based care which can be responsive to evolving healthcare needs. It is not suggested that there is one specific model which would be a panacea for disability services. The multifactorial nature of these services requires flexible and evolving models, but this does not preclude applying and adapting evidence-based models. PDS was an aspirational vision to achieve equity across children's disability services. However, aspiration needs to be matched with evidence, especially when dealing with complex services, such as children’s disability services. The Minister of State, Deputy Rabbitte, has stated, "I can see the policy is not working and I am trying to fix it." As the HSE seeks to address the visible challenges relating to service provision and to staffing, it is imperative that it develops a fit-for-purpose and evidence-based delivery model for the complex area of children's disability services.

Therefore, we recommend the following: review and revise the service-delivery model for PDS so that it is based on systematic and comprehensive research to identify current disability models of service internationally; critical analysis of service delivery models with a view to determining applicability to the Irish context and understanding the need for differentiation across a large and complex population; meaningful engagement with key stakeholders including clinicians, parents and carers and children and young people with disabilities, incorporating their perspectives on what features are required for an effective service; and engage with multi-sectoral stakeholders to integrate evidence from relevant bodies beyond health care, including education, housing and transport. In any future reconfiguration of services, it is imperative that features of existing services that are delivering successfully are maintained and integrated into any new model, or if ceased that this is a decision well supported by research and practice evidence. Programmes of reconfiguration need to be rolled out in conjunction with quality improvement and change management strategies. Finally, in the complex area of disability, new developments in models and frameworks are happening at the international level, hence there is an ongoing need to monitor and evaluate these developments and be able to adapt service delivery methods in order to achieve improvements and greater effectiveness for children and families in the Irish context.

Deputy Dessie Ellis

I thank Dr. O'Leary and Ms Moran for their input. Dr. O'Leary mentions that the roadmap for service improvements. That was published in October 2023 and includes supports to enhance responses to children and young people with complex needs for them and their families because of their disability. Under the roadmap, an interdepartmental oversight group has been established, chaired by the Minister. Can they give us some insight into what this oversight group is and who represents them? I am just curious. The Minister may be chairing it, but have there been many meetings and what have been the outcomes?

Dr. O'Leary mentioned disability reconfiguration. What are the challenges, because there are lengthy waiting lists, a high staff turnover and embargoes, and there are children waiting on assessments? In my own area, in CHO 9, it takes two years or more to see a team which is absolutely crazy because we need early intervention. I am aware of a good number of people in my own area in that boat. It is very unfair.

Can the witnesses also tell us what engagement is taking place with the disabled persons representative organisations, DPROs? We are constantly getting the message that disabled persons organisations, DPOs, are being left out but that the bigger representative groups are being heard. What engagement do the witnesses have with individual people with disabilities?

The waiting lists in different areas for speech and language and autism assessments tend to vary. It is quite worrying that it can be fairly fast in some areas and delivered reasonably quickly but in other areas it is slow with long waiting lists. How do we close that gap? Part of the action plan was to give us an avenue to close those gaps. Is it down to recruitment? Recruitment is a major issue, but it is not everything. Retention is another issue. We need to keep people in their roles as best we can. Perhaps the witnesses could give us some insights.

Ms Geraldine Moran

We will start with the roadmap, which relates to the period 2023 to 2026. The roadmap highlights many of the issues the Deputy referred to, such as those relating to staffing, assessments of need, waiting lists and growing service demand. We are just one year into the roadmap. The difficulty is that there have already been a number of issues with it, such as that it is not fit for purpose. There has been a great deal of intervention by the likes of Fórsa and the staff on the ground, who are saying that this plan was set out without any consultation with staff, children's disability network team, CDNT, managers or those who are expected to deliver the service. There was lack of consultation, but now consultation is beginning to happen.

Going back to what we are about, we go way back before this. Our research started in 2007, when this and PDS were just conceptualised. We looked at how we needed to provide, as Dr. O’Leary stated, a service that is equitable for all. Some of the challenges we face now existed previously, and that is what PDS was set up to address. Unfortunately, just because we changed the model does not necessarily mean we get results. In the research we highlight that decisions were made and plans and pathways were put in place without looking at the local and national evidence of what was working and what was not. In addition, international evidence regarding what does and does not work elsewhere was not considered. We are not saying we can take an amazing model from Australia, New Zealand or wherever and apply it to the Irish context. However, we can look at a model and the evidence base relating to it and say that there is evidence to support it. Unfortunately, this has not been the case.

Many years have passed since 2009. Now is the time that we must almost call a halt to this and stop trying to chop and change. We need to go back to what we know are evidence-based strategies in order that we can move forward with a proper plan in place and not make decisions on a whim. We will put staff in schools and take staff out of schools. We will put multidisciplinary terms, MDTs, here or there. If that does not work, we will employ private therapists. The Deputy highlighted a number of issues relating to staffing, assessments of need and waiting lists. We need to go down a layer below that, look at it and ask why it has not worked. Those are surface issues. They are extremely important, but we need to go back to the research. That is what Dr. O’Leary and I are seeking to address as part of our work in the universities. We do not have the answers for all of these questions, but we hope that this is one important factor to lead us towards those answers.

Dr. Noreen O'Leary

Building on what Ms Moran was saying and touching on the point the Deputy mentioned, recruitment and retention are important. The roadmap mentions that there are high rates of staff turnover within CDNTs, and there is anecdotal evidence of the loss of many experienced clinicians. One of the concerns we have is that if we do not address these more fundamental issues with a model for delivering children’s disability service that is grounded in evidence-based principles, then, even with increased resourcing and recruitment, we will continue to still see the high level of staff turnover. It is obviously difficult in any health services but I think it is more so within children’s disability services, where relationships with children, young people and families are very important because it can take a long time to get know a child, to get to know the child’s communication style and their preferences and to build trust with their families. If there is high staff turnover, it is very impactful for a service and it creates a great deal of disruption. It is so welcome that there will be increased resourcing, but we need to look at this in a much more fundamental way. When people are in these posts and within the teams, how are the teams being supported to function and work in a way that is providing meaningful interventions? Assessment is definitely an important part of the work of disability teams, but there is a risk that if we overly focus on assessment, it is to the detriment of interventions. Inclusion Ireland compiled a survey in 2022 which indicated that while families want access to proper and comprehensive diagnostic pathways, once they know what their child’s needs are, there needs to be pathways to be able to access the interventions.

I agree with the Deputy. Coming back to point he mentioned about the waiting list times varying in different areas, one of the core aims of PDS was that it would address what has been called the postcode lottery. Data gathered shows there are very different waiting times. Again in 2022, another a survey commissioned by Inclusion Ireland indicated that 33% of families in Ulster were still awaiting services. That was up to 59% in Munster, with varying numbers in between. We can see that the goal of providing comparable service wherever in the country a person lives is not happening. That is obviously impacted by the staffing levels.

The Deputy mentioned the oversight group in the context of the roadmap. With regard to the work we have done so far, that is not an area we have been involved with. We – and, I think, many stakeholders – would absolutely welcome an opportunity. It is part of the reason we felt it was very timely to make this submission to the committee. Because the work relating to the roadmap is under way and has not progressed too far yet, there is an opportunity to perhaps pause and consider, as well as issues around staffing, retention and infrastructure, the more fundamental issues.

Deputy Dessie Ellis

That is also a question I had. I wanted to ask about infrastructure. For instance, Sacred Heart in Finglas needs new buildings and other things, and there seems to be a kickback in terms of putting in new buildings that are designed for the purpose of catering for those with autism and special needs. Is that a matter the witnesses examined? They are sort of indicating that the oversight group looks at that more than they do. Is that correct, or have they done that?

Dr. Noreen O'Leary

It was not a major in aspect of what we were looking at. However, there is an acknowledgement in the roadmap that there are issues. I refer here to the fact that some teams are still not co-located and do not have buildings which, as the Deputy said, are fit for purpose. The latter absolutely makes the work of disability teams more difficult. It also makes it more challenging for families. We have heard of cases where if a building is not available locally, families still have to travel to access their service, when, again, one of the goals of PDS was that families would not have to travel.

Deputy Dessie Ellis

The point I am making is that many of the schools are being pressured to make space available rather than build new units, and that is a bit of a worry from what I am hearing. I wanted to highlight that.

An Cathaoirleach

I thank Deputy Ellis. I call Deputy Murnane O’Connor in place of Senator O’Loughlin.

Deputy Jennifer Murnane O'Connor

I thank Dr. Noreen O’Leary and Ms Geraldine Moran for coming before the committee today. It is very important for all of us in our areas. I am in CHO 5 and I work with parents who are waiting for their child to be assessed. Parents simply are at breaking point. I have had parents come into my office who actually were crying because they were waiting for assessments and were trying to get their child into a special class. At this stage, there needs to be radical change. Our guests are right. In the absence of this radical change, the families and children are really being affected. I am really worried about this.

Yesterday, in Carlow, the HSE held a family forum, which it is now doing. It just happened that I was at a meeting in Carlow of a group which is setting up autism heroes. It is a new group that has been set up by a lady who has come home from Australia and who has seen the Australian model. I note Ms Moran spoke about the Australian model. She now has been home for two years and her child still has not been assessed. Her child has been waiting for two years for an assessment. It is not really good for him either and he is losing out.

While I need to get this clarified, my understanding is that the Minister of State, Deputy Rabbitte, is making proposals whereby parents can now get their child assessed privately and can claim back the money. Is that true?

An Cathaoirleach

That was approved by the Government this morning. While I do not have the full details of it, there was money committed to that by the Government this morning.

Deputy Jennifer Murnane O'Connor

That is really important because when I spoke to parents yesterday, that was the biggest question they had around getting their child assessed privately. It is going to have to happen now and it could cost up to €1,200 or whatever. I do not know what the price is now but it is very expensive. At least now I can say that. It is important we let parents, the HSE and others know about this. I welcome that today. I was not sure but that is a really positive step for parents. We need to work on that.

Do the witnesses know anything about the working group which is currently examining the waiting times for the intervention and assessment of needs? The disability action plan notes that evidence shows early intervention can have a positive impact on a child and the capacity of the system overall. Do the witnesses have evidence available to show in this regard? We all know, by the way, that early intervention and how we go about that is absolutely key. The witnesses may come back to me in the context of any of the outcome indicators of the assessment progress and of quality of life outcomes for children with disabilities.

There is another issue that I have picked up on recently. It is a worrying one. The disability action plan stated "In September 2023, the HSE reported that there were around 15,000 children awaiting an initial contact from their CDNT". The service improvement plan, however, states “Over 16,500 children are awaiting their first appointment with a CDNT.. Can the witnesses discuss these discrepancies? How we sort and find a solution for this? How do we get the correct figures?

I can only speak about Carlow CDNT. I have to say that I work with the HSE very well. Staffing is a huge issue. I know a huge recruitment campaign is going on at the moment. My understanding is that for CHO 5, in the Carlow area it has one extra person in this recruitment campaign. While it is looking for a lot more, my understanding is that one new person is starting. There only was one person, which means we will have two. The concern in this regard is that there will be burnout for everyone, not just for speech and language therapists or any therapist, but also for families and the children who are suffering. We really need to find solutions to this.

One things that has come up here at the committee and which the committee is aware of, is that children with complex needs are being left at emergency services, that is, respite and special education services because parents have no other choice, as they cannot access services. Can the witnesses discuss how this can be managed? I have never seen things to be so bad and I have been working with the HSE in different areas for years. I have never seen parents at breaking point waiting to get their children assessed. I am worried about the parents but I also know they are only thinking of their children. What are the urgent solutions? Today we have a good solution from the Minister of State, Deputy Rabbitte, in that they can get their children assessed privately and will get it back. I presume they have to be HSE-accredited and recognised. Is that done through the HSE? I do not know; I am trying to get the information.

An Cathaoirleach

I do not have the full specifics but I know there was money committed to it.

Deputy Jennifer Murnane O'Connor

Okay.

An Cathaoirleach

I hope we will get the ins and outs of it and the information.

Deputy Jennifer Murnane O'Connor

That is urgent. These are my questions. As I said, I am in CHO 5 and I am working with families daily. We need to do more because I am really worried about parents and the children as well, of course.

Dr. Noreen O'Leary

There is a lot in there. A lot of it captures very much the position across the country, probably. While the Deputy can speak for her CHO, it reflects a lot of experiences.

To come to the recruitment piece the Deputy mentioned, there is a real challenge in recruiting to disability services, as we mentioned. There are issues in this regard. For new graduates and early-career clinicians, there is this acknowledgement that disability services are very challenging places to work in at present, given extensive waiting lists, staffing gaps and staff burnout, as the Deputy referred to. There is a lack of those experienced clinicians to support new staff. The knock-on effect of that is that waiting lists grow. For families, it is extremely difficult because they perhaps do not have a point of contact and are waiting longer times for assessments and interventions to even feel like they have a link to the team. That is something which has come up when parents have been spoken to. They feel they just do not know who is on their team or who their team is. There is this feeling of being a number on a waiting list.

We absolutely welcome funding in order that families can reimburse the cost of assessment because it is very distressing for families waiting a lengthy amount of time.

The Deputy referred to the urgent piece of what can be done. At a current level, we need to start looking at the inputs teams are providing and the supports they are able to provide. I am sure that across the country, there are areas where there are programmes and intervention services that are having success and there are things that are working and meeting the needs of families. We can look at that to try to see how we can replicate that. Is it a matter of providing additional resources to different areas? Is it a matter of providing training to teams? What is it that could be extrapolated that is already working? We are sure there are elements. There are undoubtedly a lot of challenges but it is about finding out what is working. In one sense, we want to ask families. We to hear from them. However, in a lot of ways, families have told us. They have told us what they want and need. They want to have access to therapies that are supportive of and tailored for their child. They want to feel that such therapies are not being universally rolled out but rather meet their child’s specific needs and that will help their child function at home, at school and will make family life easier and reduce some of that stress. We need to look at what can we then do. In a way, we kind of know what they need in that sense. They are telling us. They want timely access to interventions and assessments.

What needs to happen to start to reduce that level of burnout? Families should not have to go to their local parliamentarian in tears. Ms Nolan and I certainly have experienced this, from clinical experience of families. No clinician goes to work and wants to have someone crying in his or her office because the clinician cannot provide that person with the service the child needs. Absolutely no one wants that and it is really upsetting and distressing. We all share that concern around how much more families can take.

Deputy Jennifer Murnane O'Connor

Yes. How much more can they take?

Dr. Noreen O'Leary

There is a long-term cost to that as well. The Deputy mentioned early intervention and how we know that it improves the outcomes for the child in terms of his or her functioning and ability to access education and to go on to independent employment. Obviously, there is a cost issue for the State as it reduces supports needed. We also need to look at the wider families and the impact on parents and other siblings of children who do not receive services because there is a wider cost in this regard that sometimes is not counted as much. We need to look at all of those things in terms of the long-term outcomes. Early intervention is absolutely key. In previous models and currently in some areas, potentially, there were successful early intervention models in which families were able to access timely interventions. Their children were supported to access preschool and families were upskilled to support children and the environment. They could then make a successful transition to primary school where their support needs may actually reduce because their capacity and skills had been built in those early years.

Sometimes the risk is that we prioritise early intervention over those children who are now older and, potentially, in recent years have maybe missed that window of early intervention.

Deputy Jennifer Murnane O'Connor

Yes.

Dr. Noreen O'Leary

We need to be cognisant of those children because, potentially, those are the children for whom things are reaching crisis point. Moreover, families feel they have no choice but to leave children, as the Deputy said, at respite or emergency services.

Deputy Jennifer Murnane O'Connor

Yes.

Dr. Noreen O'Leary

It is often as children get older that things can come to crisis point.

Deputy Jennifer Murnane O'Connor

Yes.

Dr. Noreen O'Leary

The links between education sectors and mental health services are very important. In terms of those initial priorities, we need joined-up thinking and working.

Ms Geraldine Moran

The Deputy made a couple of important points and asked what can be done. While Dr. O'Leary and I do not have all the answers and our research only covered a small but very important component, members have spoken to families and representative groups for families and have gone into schools. We are keen to encourage members to talk to CDNTs, which are very open.

Deputy Jennifer Murnane O'Connor

Yes.

Ms Geraldine Moran

We have experienced it as clinicians, but the trauma experienced by parents is horrendous.

Deputy Jennifer Murnane O'Connor

Yes.

Ms Geraldine Moran

We try to hold it together when we see that trauma because we are human too but there are some good news stories, which is what we want to see. We want to build on the number of good news stories. There are lots of things within PDS that work really well. The medical model of disability and disability services provided services. It brought people in, gave them a block of therapy, sent them on their way and they were gone from the waiting list. We are talking here about children who have complex needs. As those needs will be with them for their lives, they will need help and support, yes, at the early intervention stage but, as Dr. O'Leary has highlighted, right through. This week I heard of a child who would have been seen to be from this golden era of services before we changed to PDS but all the supports, including staffing, went into assessments and there was no space left for therapies. The child in question is a teenager who is about to sit a leaving certificate exam and he is extremely anxious. A psychologist within the CDNT is holding that child and trying to support him to make that transition and sit his exam. So not only do CDNTs deal with challenges-----

Deputy Jennifer Murnane O'Connor

Yes.

Ms Geraldine Moran

-----that arise they must also deal with historic gaps in the service. Again, unfortunately, it is funding and getting staff. If CDNTs were staffed at the level required then they would go a long way to meeting the needs of these children and their families.

Deputy Jennifer Murnane O'Connor

Yes, they would.

Senator Tom Clonan

I thank Professor Moran and Dr. O'Leary for carrying out this research, which is very much appreciated. Even though their research is a preliminary investigation, it confirms what we know subjectively. On the research design, from my understanding of the summary, they have carried out an audit of documents that they consulted and from those conclusions have been reached. I can only imagine what one would find if a cohort of members of CDNTs or parents were interviewed. Such research would really lift the lid on all of the trauma and suffering that has been mentioned. In the autumn of 2022, we, as a committee, had an on-the-record admission by Paul Reid, the then CEO of the HSE, that PDS was a failure. I note that the Minister, Deputy O'Gorman, and the Minister of State, Deputy Rabbitte, have launched this roadmap along with the funding that is involved. However, I still think it is a fundamentally flawed model.

As a parent and a carer of a now adult, my son has received no meaningful therapeutic input since the financial crash, which is now 12 or 13 years ago. As part of his neuromuscular disease, he has scanning speech, that is, dysarthria. I imagine that in another jurisdiction, he might have received sufficient inputs to save his speech. One's voice is the most powerful instrument for mobilising social, personal and professional power. He has been let down by the State. It is not the fault of any member of a CDNT. It is not the fault of any speech and language therapist.

When I consider this matter from an overarching position, as a society if a person gets chest pain, God forbid, then you probably will be seen. Notwithstanding the challenges in EDs, you probably will get scans and receive treatment. If a person is involved in a road traffic collision then you probably will be treated. If a person is a disabled child in Ireland, whether on a waiting list for complex spinal surgery or one of the many hundreds of thousands on waiting lists for an assessment, it is likely you will not get any intervention within the therapeutic window. I think that is an international scandal.

I wonder whether our guests have a view on the following. I cannot find any evidence of clinical sign off on PDS. I cannot find evidence of any sort of a risk assessment of what would happen to our children when we migrated to the PDS model, which our guests have confirmed is not based on any evidence nor international comparison or evidence of practice in other jurisdictions. Therefore, who is responsible for this absolute failure, as described by Paul Reid?

Last Friday, I received a letter from a CDNT manager who expressed dismay and upset at the criticism of PDS as she felt it implied some criticism of therapists and clinicians. I want to make it abundantly clear that there is no criticism of therapists or clinicians. It is the lack of funding or even a plan.

I ask our guests to please forgive me as I have not read the full report but it seems to focus on the impact of the provision of services and assessments of needs. The impact on children is immeasurable. The lack of intervention within the therapeutic window leads to life-limiting and life-altering consequences for hundreds of thousands of people, and their families, siblings and parents. I know, as a parent, what it is like to watch your child or adult deteriorate. I have been in situations where you might get one consult where they measure the deterioration in your child. All one gets in Ireland is a measurement of the deterioration in your child. I wonder is there scope for research into why no risk assessment was carried out and who is responsible for that within the State.

I am also conscious that, notwithstanding the funding that has been made available, if you do have an assessment of need, all you have is a piece of paper which is only good for waving around, or maybe eating or wallpapering the bathroom because it will not provide. The only reason children get an assessment of need is because of the legal obligation in the 2005 Disability Act. I have heard a Minister say that we should do away with the provision because it uses up resources, which is a perverse argument as if doing assessments creates need. The need is there and if we can do assessments in other jurisdictions then why can we not do them here?

In other disciplines and areas, somebody has ultimate clinical responsibility and they are amenable to be held to account for that.

Who is responsible in the PDS system or is there no responsibility? Was a risk assessment carried out? Should one be carried out now on any move to another model?

Both witnesses are very experienced speech and language therapists who have moved into the third level space. I am trying to make sense of why disabled citizens, children in particular, are so badly treated and so badly failed in this jurisdiction. My hunch is it is something to do with a post-Catholic sort of view that makes it all about charity. It is a gift from God and the responsibility of the family. We saw that written into the wording of the constitutional referendum on care. It was actually coded into it that it is the responsibility of the family and no role is seen for the State in supporting families and carers.

I am sure the witnesses go to conferences, present papers and meet their colleagues from all over Europe and around the world. Is it the same everywhere else or are we outliers? My sense is that we are outliers. My nephew who did physiotherapy in the Royal College of Surgeons in Ireland got a job in the NHS. Despite all of the problems in north Wales, after he came back to Ireland and worked in a CDNT in the HSE for about a month, he told me did not even have the language to describe it. He described it as absolute chaos, anarchy and trauma. He is now doing graduate entry medicine in University College Dublin. He just could not work in that system. Are we different and, if so, do the witnesses have a view on what makes us different? Why can other states can give disabled citizens socioeconomic rights to treatments and therapies whereas we seem to be very resistant to doing so? I apologise for the long-winded set of questions. I thank the witnesses for the work they have done.

An Cathaoirleach

Who wants to start?

Ms Geraldine Moran

I will start. I agree with all of that. When we went back and looked at the research, even though we were not specifically looking for a risk assessment, we found there was no evidence of risk assessment. We were surprised by the approach taken. From our point of view, it showed a lack of research but also almost a lackadaisical approach.

If we go right back to the period between 2007 and 2009, a committee - a reference group - was set up to look at how disability would work and so on and it came up with the model we now know. We could not find within that any evidence. We sent in a parliamentary question just to check if we were wrong or had missed something. We were looking at the key national documents, which Dr. O'Leary outlined in her opening statement, and were told this was where all the documents were. When we submitted the parliamentary question we were sent a link to all the key national documents and there was nothing there, or nothing that we saw, around risk assessments.

We then went further and requested, under the Freedom of Information Act, the minutes of this reference group. Ten meetings were held over the course of two years and we were able to access eight of the ten sets of minutes. Two could not be found and we asked again. We would have loved to have seen those two sets of minutes because they were the first two sets and were meant to be available. They could not be found, however. In those eight sets of minutes, there appeared to us to be a real lack of planning and of checking what was out there that could be used.

The Senator asked of we are outliers. It is quite possible we are. If we want to set up a model, what is the first thing we do? We look at what is working and what is not; what is working here and what is working abroad. Then we take the best from that and apply it in an Irish context. We could find no evidence of that. If we look at the National Council for Special Education, NCSE, it produced its document on special classes and so on in early January. It refers to the research committee the NCSE had, which looked at all the different strategies that were being used locally and internationally and from which it drew. From what we looked at, we could not find any evidence to show this had happened.

The Senator mentioned the rights-----

Senator Tom Clonan

Is that not a very dangerous practice?

Ms Geraldine Moran

For something that is so monumental-----

Senator Tom Clonan

Without naming anybody, can Ms Moran recall the professional qualifications of the person who chaired those committee meetings? Was it a clinician or was it a manager from the HSE?

Ms Geraldine Moran

It was a person from the HSE, I think.

Dr. Noreen O'Leary

The composition of the group is stated in the report in question and, as far as I recall, there was a mixed representation of people. They definitely had clinical experience. I cannot say for definite whether they were still in clinical roles but there was representation from across different professions and arms of the HSE. As I said, information on the membership of the group is available. It is stated who was on it. In its final meeting, the group agreed the report that was then submitted to the HSE for approval. I presume it was approved because it became the foundation document for PDS. Beyond that, there were details that certainly were not available to us. That is not to say they do not exist somewhere but I refer to what we had access to. I do not know.

An Cathaoirleach

This may be something the committee could investigate further.

Senator Tom Clonan

Can I ask about the cultural piece? With all of the witnesses' years of experience, can they come up with a reason to explain why we are treating disabled citizens in this way?

Dr. Noreen O'Leary

I think part of the reason is a lack of proactive planning. Our history has been very reactive to the needs of children, young people and adults with disabilities. The needs change over time. We can see that between 2013 and 2023, there was an increase of over 2% in the number of children who need access to children's disability teams but we are not planning proactively for that. There is also the issue that providing services for children with disability is not as simple or straightforward as saying that if we do X, we will get Y and the issue will then be addressed and fixed. As Ms Moran said, most children with complex needs will need supports of different natures at different times. In health services, we are sometimes more focused on things in which we can see clear inputs and outputs. Disability services do not lend themselves to that. They are much more complex. You cannot measure success by throughput. You measure by functional gains. There are intangible things such as family functioning, children's well-being and their participation in their community. They are perhaps not intangible as they are measurable but they are not as clear. Those are complex things to measure and to evaluate.

As Senator Clonan pointed out, as a country, the history of how we have supported and treated people with disabilities has not always been good, and that is potentially the case even now. This is not a period on which history will look kindly. Perhaps in other countries there has been more proactive planning and a greater acknowledgement that current and future needs need to be looked at. It is not that there is one perfect service but if we look at, say, Australia, it moved from have a service in which services were delivered by the state to one in which budgets are now provided to families individually through the national disability insurance scheme. While it is not perfect and issues have certainly arisen there, what it showed was a responsiveness to the need that was there, to what families themselves were saying they wanted and to their autonomy, and it showed trust that families may know best what their child needs.

It is not that families need to be the people who deliver the service. I want to touch on that as well. The Senator mentioned that he has had one consultation for his son. It is really upsetting to hear a measure of deterioration in the service provided because no clinician would want that to be the service. I imagine for the family it is hugely difficult to see that.

It is important to note that there has been a cultural move away from the idea of providing one-to-one direct therapies, which are often seen as the medical model. Direct, clinician-supported interventions need to be part of any effective model of disability services. Yes, we need to support families and carers and provide training and education. However, there is a worry that we are moving so far away from it that is almost the case that too far east is west and that we are losing a very important part of what is necessary. Families are telling us that this is what they want when it is appropriate. This issue comes back to the cultural piece of listening to the families, children and young people themselves about what they need because actually, they know best about what they need, and we need to listen to that. Culturally, we do not have a strong history of that. It is something to reflect on.

Ms Geraldine Moran

We really do not want to be critical either. There are good news elements, and we are not laying this at the feet of the Department of Health. There is a need for universal, joined-up thinking. Regarding the Department of Education, we speak of schools, classes, inclusion models, etc., but we often wonder about teacher training, which takes a very short time. We are finding that many of the teachers in special classes are coming fresh out of training and are being sent into a specialist class to be a teacher. We want the Department of Education and the Department of Health to work side-by-side to support individuals with complex needs. Yet, from previous experience on the ground, we found that newly graduated teachers are teaching these very complex children. We feel that teachers of special classes should hold AP posts. They should require additional training, such as a postgraduate degree, etc. The staff from children's disability network teams, CDNTs, are now almost filling the backlog for teachers who do not have experience in working with these complex needs. They are expecting the CDNTs to come, fix the child and then they can teach them. They need to have a certain level of knowledge to be able to support the child. Then, the CDNT can liaise. The Senator is querying attitudes, but this should happen right across our different Departments.

Senator Tom Clonan

I thank the Chair for his latitude. I thank the witnesses for doing the research. If they do not mind, I would like to reach out and make contact with them.

Ms Geraldine Moran

That is okay.

An Cathaoirleach

I call Deputy Canney.

Deputy Seán Canney

I thank the witnesses. It was very interesting, if not worrying, to hear about what is going on. I can go back and tell the witnesses about everything that is wrong, but my first question to them relates to what is being shown to be done right in their research.

Ms Geraldine Moran

I will start by speaking about my experience. My history was working in special schools. I worked in a variety of different special schools, pre-PDS. I worked very closely with teachers, and I was very fortunate to work in some really special schools. I used to compliment them on their level of knowledge. By going into different areas, I realised that the skill that is there.

Yet, if you want to give a service to a child and a family, this needs to be available across all environments. The PDS programme has allowed us to do that. It has allowed clinicians on the ground to provide a service right across the board. We speak of clinics, buildings and so on, but the real work is done with families in their homes. Clinicians go into the home, meet the families, see where they are, and go into the school. It is a wonderful asset to be able to go across all environments to provide a three-tier model of supports, namely, universal, targeted and direct supports. The progressing disability services programme has allowed us to use that framework to give a combination of supports across all tiers, and that has worked really well.

This interdisciplinary idea has also worked very well, such as where a speech and language therapist and an occupational therapist might go to support a child who needs support in settling into their class, etc. All this interdisciplinary work is working really well. As I mentioned earlier, if you speak with CDNTs, as is mentioned in the roadmap, the families are pleased when they do receive the therapies. The worry, as the Deputy pointed out earlier, is about all the work that is going into assessments. Unfortunately, then, because of a lack of resources, that is not allowing staff to get on with the therapies. While the piece of paper is wonderful to have, if it is blocking you from accessing services, that is a challenge. Those are a couple of aspects. Dr. O’Leary will be coming from a different, more community-based perspective.

Deputy Seán Canney

I am looking at some parts of the PDS that are working right, but let us target what is not right and try to put it right.

Ms Geraldine Moran

Yes.

Deputy Seán Canney

I wish to offer some information on the issue of staffing levels, which comes up. I have a report from our own CDNT in Tuam. We are at two thirds capacity with our staff. The problem is that we are down four-and-a-half whole time equivalents, WTEs, for speech and language therapists. On the practical side, I met a young speech and language therapist in Dubai at the end of January, when she was on her way to New Zealand. She had worked in the HSE for two and a half years, but it refused to make her permanent. She is over there now. I could do with her in Tuam.

Ms Geraldine Moran

You could.

Deputy Seán Canney

There is something fundamentally wrong when that is what young people are doing when we train them here in this country. These are the options they are taking. Everybody wants to travel and there is no problem with that. The reason she was traveling was that she was not offered a full-time, permanent position, so she was going to explore the world while she was young. If people were being offered full-time positions, they would understand that as recognition of their qualifications. They would then add to this figure that I have to hand. A huge recruitment campaign is going on by the HSE, which is what the paper says here. At the same time, people are shouting to get in but then they are walking out the door. There is therefore something wrong. The retention of staff is an issue. I have a further question on that.

Another issue Ms Moran raised related to the buildings. In Tuam, we have a fine CDNT building that opened last October. I fought hard, with others, to get the funding in place to make sure all the services could be put into one place. When the parents had their first forum meeting last October, they realised how bad things really were when they spoke to one another. They took to the streets in December. Some of them met with Senator Clonan this week.

The research the witnesses have done is good, but we need to get back to the basics, such as the training and retention of professionals. I do not know how we can get that message to the HSE, the Department of children and youth affairs, or whoever is now responsible for holding onto these people. This embargo has been used to great effect for political reasons. It has been said that they cannot take people on because of an embargo and that is creating more pressure. At the end of the day, none of us as public representatives likes this. I am sure everybody in this committee room, as well as everybody else in the Dáil and the Seanad, has parents coming into them in a bad state. That is where the failure is. The families are being failed and there are practical things we need to do. We do not need to have huge working groups or that group that was mentioned.

From what we have seen, that group may not have the necessary expertise. We have something now and, if we hear about the reconfiguration of services again, the parents will go entirely AWOL because, for many years, they were sold the line that the reconfiguration was going to take time. We now need to take what is good and start building on it. Will the witnesses comment on that?

Dr. Noreen O'Leary

We agree that we should not throw this out and start from scratch again because that would cause a great deal of disruption for everybody. It is about acknowledging the very real challenges and, as the Deputy has said, finding what is working. He mentioned that we need to go back to basics. That is what we are saying as well. We need to look at the fundamentals of this and how the teams are set up, how they are working and how they deliver services.

Addressing that will help with the retention issue. As I mentioned earlier, staff are finding disability services challenging to work in - Senator Clonan gave the example of his nephew earlier - and they are choosing other options. For some people, such as young new therapists, travel may be an option. There is certainly anecdotal evidence of more established and experienced clinicians choosing to pursue other careers, to take on different roles within the public health service or to go into private practice because of that burnout we talked about earlier and the emotional impact of seeing families really upset and not being able to help them. That goes against everything you want to do as a clinician and people are struggling to continue to work in that kind of environment. If we can make children's disability services better places to work, it will help with that problem because staff will want to stay and other people will be more encouraged to come to work in them.

It does not have to be one or the other. Instead of throwing something out, we should pause and look at the fundamentals of how interventions can be delivered and how to most effectively meet the needs of children and young people. That might involve looking at what is happening internationally, taking what seems to be working and trying it here or finding out what pockets of things are working well here. There is a research approach called appreciative inquiry. People are brought together in what is very much a strengths-based approach, you look at what is working and what people are happy with and then consider how that can be replicated. We should do those things and put the findings into practice in a very timely way.

There is sometimes a feeling that we need to address everything before we can do anything. The situation is so urgent at this point that we need to start doing something but that something must have a strong rationale behind it. In talking about this, Ms Moran and I feel that we tend to be very reactive to issues in disability services. That can lead to a lot of chopping and changing and an inconsistency. We need more proactive planning and to make decisions based on good evidence from research and practice, based on what is needed. I acknowledge that things will change over time. That is okay but it should be approached in a systematic and proactive way. The Deputy mentioned his area of Tuam. Ms Moran and I-----

Ms Geraldine Moran

We are familiar with Tuam.

Dr. Noreen O'Leary

A family I know shared their story about accessing speech and language therapy and occupational therapy online through Zoom with somebody in Australia. That is obviously very disappointing when there is a state-of-the-art CDNT centre in their area.

Deputy Seán Canney

In fairness, the staff there are brilliant. The problem is they are working under a lot of pressure. Dr. O'Leary hit on that. That is my biggest worry. In addition to the parents and families being under a great deal of pressure, the staff will be looking for a way out if they do not get help. The help they need is for the vacancies to be filled.

Ms Geraldine Moran

That is absolutely it. I lecture masters students who are about to graduate in the University of Limerick and a number of them are quite interested in the area of disability. It is a complex area to work in. You need skills, support and mentoring from senior speech and language therapists to work in that environment. It is extremely rewarding. Those of us who have worked in the area are really passionate about supporting these individuals to be the best they can be. It is a great place to work. The Deputy pointed to the problem of temporary jobs. There are problems with staff grade personnel doing the work of senior grades. They need to be upgraded to those senior grades. There also needs to be clinical specialist roles in progressing disability services. There are clinical specialist roles in the hospitals. Why is there none in these services? That would bring research right down to the ground level. If we do all of this, we will keep our therapists. Of course, every young person wants to travel but, if there is a good environment to work in, they will then want to come back as well.

Dr. Noreen O'Leary

May I add one point? When you are working in children's disability services, the relationship between the family and the therapist is really important. It is a really relational type of work. At the moment, trust between families and therapists is being eroded. That is a real concern about the effectiveness of the therapies we can provide. By the time families can access those therapies, it may be very difficult and staff may not have the capacity to develop that relationship. That is something that has a big impact on staff.

Deputy Pauline Tully

Having read the opening statement, where did the idea to reconfigure what was there before PDS come from? I have heard it was because the early intervention and child development teams were working well in some areas and not so well in others and that the idea was to provide an equitable service across the board to everybody. Families have told me that it did provide equity but only in that nobody got anything. I take from what the witnesses have said that staff who worked in those teams were not spoken to or consulted with in advance of these changes. I know parents certainly were not. They were not consulted in any way or by any means. Ms Moran just described to Deputy Canney what was working well. A child being supported in the home environment and in the school environment sounds like it should work really well but, to the best of my knowledge, that is not happening. Perhaps it is in some areas but I represent the counties of Cavan and Monaghan and we have two CDNTs, one run by Enable Ireland and one run by the HSE, both of which have serious issues with recruitment and retention. The HSE team has slightly better rates of recruitment and retention than the other team. The pay disparity is probably affecting that.

Ms Geraldine Moran

Yes, it is.

Deputy Pauline Tully

Neither is fully staffed and neither is providing a wonderful service. That is not a reflection on the staff. It is a reflection on the whole system. Ms Moran talked about working in a special school. I was in a special school yesterday and the principal said that, some years ago, the board of management hired an occupational therapist to come to the school for three days a week. That OT worked with the children and the teachers and SNAs picked up some of the procedures and systems she used and were able to replicate them, which resulted in the therapist only needing to be employed two days a week rather than three. She was training the staff by showing them what was happening. When this model was introduced, I thought families were supposed to be able to choose to have services in the school or in the home. That did not transpire. In fact, special schools lost their therapists. No risk assessment was carried out. Parents were very concerned that no risk assessment had been carried out for children with very complex needs. We need to see the services going back into the schools. I believe there is disagreement between the Department of Education and the Department of disability on that. Under the school inclusion model piloted in CHO 7, therapists went into mainstream schools and worked with the staff. The NCSE has told me that, where that was done, the requirements of the CDNT reduced dramatically. We need to see a joined-up approach from the Department of Education and the Department of Children, Equality, Disability, Integration and Youth whereby clinicians and therapists work in the schools but also provide therapy in the community, where required.

However, at the moment it is disjointed. We have parents looking for assessments for children, not necessarily to get therapists but to get a school place. The pressure is coming from the schools as well. They say we do not have enough places for our children with additional needs so we need to determine who gets one and an assessment is needed. The assessment is then done. I acknowledge the Minister of State, Deputy Rabbitte, said that parents can now get a private assessment and have it paid for but I am concerned. I do not think the capacity is in the private sector at the moment to actually address that. It might encourage more people to move from the public to the private sector. We still have unregulated psychologists. There a lot of problems with that as well.

Ms Moran has addressed a lot of issues here this evening. Where did the model actually come from? Are she aware of international models used by other countries that are doing something that could work here? Do it need to be more school-based? I am of the opinion that is the way to go. We are not doing away with teams in the community but they should be linked in much more strongly with the schools, especially with special schools, but also with mainstream schools, particularly if they have a unit or special class.

Ms Geraldine Moran

The Deputy has made a number of really important points. NEPS psychologists operate in schools. There is no reason there could not be NEPS OTs and SLTs working within the school system and joined up for consultations with the local CDNTs. At the moment, the CDNTs are trying to fill the gaps in all areas. There could be MDT members working in the school set up under NEPS. It is lovely to hear the story about the OT coming in privately for three days and then only needing two days. That was upskilled. My question would be: what will happen next year when that teacher goes on maternity leave or decides to travel? Have they to go back and start again?

I mentioned the fundamental upskilling of teachers. It is a really intensive programme to train a teacher. We are not saying special needs can be incorporated into that, even though a very small component of their training is special education even though they will not work in that area. That needs to be examined to bring teachers to a level where year-on-year they do not have to go back and be retrained to take on that work. They should be operating at that level where they can then link with the CDNT. That would be really important.

Dr. Noreen O'Leary

That idea of more joined-up thinking and work between the Departments of Health and Education was one of the fundamental goals of PDS. That was one of their core objectives in the initial report in 2009 and it has not been realised. A circular was issued by the Department of Education quite recently saying it will not include CDNT figures in its calculations of special education teaching hour because it feels it is not an accurate representation, which is a very worrying development. It gives an insight into how the relationships between those Departments are at the moment and we really need to strengthen those.

The Deputy asked why was this model set up. It is one of the reasons we have been very keen to see the minutes of the initial meetings of the reference group. We hope that is where we might find that information. From the documents we could access, a driving force seemed to be the fact that there was a geographical inequity. There was a postcode lottery and some pockets of the country where children were receiving quite a good service. We are certainly not saying that it was perfect but they were receiving a good service. Families on the whole felt reasonably happy. They felt they were better off once they were with services and that things were improving. There were other pockets of the country where there may have not been a service provider. That goes back to the fact that services developed in a very ad hoc manner with some delivered by the HSE and others delivered by voluntary agencies. There was no co-ordinated development. From what we looked into, the driving force around it was that in a region, they are going to pool the available resources and create services that are more geographically-based. The aspiration was that children would be able to access their services local to themselves

. As the Deputy mentioned, from the very outset there was an issue around children who go to special schools. By the nature of special schools, children come from a number of catchment areas. There was a concern about whether four or five CDNTs would feed into the one school and how that would work. One of the concerns we found in our report was that there was not really an evidence base put forward in the initial report for the ceasing of school-based therapies. We have now seen a period where a lot of families have communicated their dissatisfaction with it. When Deputy Micheál Martin was Taoiseach, he described it as a dilution of services for children in special schools. We are now in a place where there has been a decision to try to reinstate those services after a period of quite a lot of disruption. Again, we have not actually seen the evidence base for that. What is different now?

Obviously we want families to be listened to. The Deputy mentioned international model. In New Zealand the model of disability services is much more housed within the education system. Therapists are much more based within the schools. As we have said, we are not saying that we should take that model and implement a blanket roll-out in Ireland, but there may be important learning from there. We could look at how can we best work collaboratively between education and health. There could be that cascade effect of therapists working very closely with schools, upskilling across the school, and teachers feeling more supported potentially in conjunction, as Ms Moran said, with more focused training for teachers and education staff so that we are coming at it from a few different angles. We can definitely look at other jurisdictions, but it is about looking at them critically and seeing how would that work in an Irish context because there will always be specific factors that will impact how we can implement something.

Senator Erin McGreehan

I welcome the witnesses. It is great to have them here and I want to congratulate them all on their work to date. What has come across regularly in our meetings on PDS is the frustration, the absolute exhaustion and the desperate worry of parents. It does not really matter what the service is called. The parents and children just want the service. We have said there are good aspects to the PDS but progressing does not seem to be the right first word for that. Stagnating might be more of an accurate title at the minute. The witnesses have said that we do not want to throw it all out because there are wins in the model.

Do the witnesses, as researchers and practitioners, have faith in the HSE to make the radical changes that are needed to roll out the aspirational wants, as they were called, that were in the PDS in the first place? Is the HSE listening? Are they engaging with the witnesses on their research? I have read their opening statement and looked through their recommendations, which are quite solid. It is about making sure we research and have an evidence base. We speak here quite regularly about the lack of data. If people are not counted, they do not count. Has the HSE or Department of children engaged with the witnesses, or have the witnesses engaged with them on getting that accurate research and the evidence base in respect of what is going right and what is going wrong? We know there are loads of things going wrong. We also know that there are clinicians in the service who are working hard and well but we just do not have enough.

If there was that evidence base, as a domino effect, would it be the case that the quick fixes, the short-term and medium-term fixes would be pulled apart and would faith be brought back to our workers by saying we know you are doing well and we can do better? Let us face it, we all could do better and we can all learn. Nobody is an expert, nobody is an island and we all can improve constantly. I seek Ms Moran's thoughts on that. We have heard, from different clinicians coming before us on different visits about that assessment of need and how it is potentially inhibiting progress to a point because as we have it in legislation, we have to give that assessment of need. I am not a clinician and so do not know but we often hear that were a child put at the forefront, you could look at and work through the individual needs of that child, instead of getting that piece of paper. Are we putting resources into assessment of needs because it is in the Act but not putting the resources into the child to be able, for example, to use a toilet or go to school? Are we potentially focusing on the wrong thing? We are all caught up on this assessment of need and as a parent, I would want that focus to be on what my child needs. Is there a happy medium between those two things? I am not an expert and would love to know the panel's thoughts on that because we do need evidence-based research. I would love to see professionals getting engaged and working on that because our clinicians and practitioners do not have time for that. We cannot expect reports to be filled out and plans to be made by front-facing people on the ground who are expected to do both things. I have perhaps gone around the houses, so to speak, but I would appreciate our guests' thoughts on this.

Ms Geraldine Moran

I will start and then Dr. O'Leary can fill in. I thank Senator McGreehan, who was noted as being quoted when we went back and did this research. I have the statement here where Senator McGreehan state that while some things were working, some were not. There is an acknowledgement that some people are getting services while more people are not and that is the challenge. She asked what is next for the HSE and whether we have any faith in the HSE. Yes, of course we have faith in the HSE. There are lots of things that have gone right about this. We certainly would not want the take-home message from today to be that the HSE has done an awful job and that the situation is desperate. There are lots of things that are working. We need, as Senator McGreehan said, to acknowledge what is working and to build on what is not working. We have just completed the research and the invitation came very swiftly to attend today, so we have submitted the research for peer review as part of our next stage. This will be submitted to the HSE and other bodies like the Irish Association of Speech and Language Therapists, IASLT, which has put a lot of interest and work into this. We also will circulate the research to the Association of Occupational Therapists of Ireland, AOTI, the professional body for occupational therapists and so on. We mentioned the roadmap. We are hoping that those recommendations will be undertaken and considered to improve things. There are many positives.

On the Senator's query about the assessment of need, we have our own ideas around that.. As clinicians, we prefer to get on with the job. For some parents and families and individuals, getting that piece of paper with a diagnosis of autism and outline of needs is gold to them. It explains who they are and what their needs are. Everybody has needs and we acknowledge that. From a therapeutic point of view, we would like to see staff and clinicians being able to get the services out there, to make improvements and not have to spend hours of time in diagnostic assessments, but there is a need for both. I remember as part of the training I had undertaken when we were preparing for the roll-out of disability services, we looked at a case where the mother of a child had said that her husband worked long hours and that she would like to be able to take her child to do the groceries, which is a simple thing. She asked what a multidisciplinary team, MDT, could do to support her so that she could take her child out of the home, to reduce anxiety around shopping. There were a number of strategies that the occupational therapist was able to do in order to assess how the sensory overload could be reduced for that child while they were shopping, as well as how a speech and language therapist could support the child in understanding doing groceries. This consisted of what their role was in the shopping, for example, taking down the cornflakes and doing different bits and pieces so that at the end of it, rather than the child having a meltdown as they were going outside the door, they understood. There is great satisfaction in being able to deliver these services and to be able to make life better for people. That is what every clinician who is working on a children's disability network team, CDNT, is passionate about and it is wonderful. There are many success stories and we just need to be able to deliver more. The only way we can deliver that is by having those extra staff on the ground, by looking at those areas that are working and by ensuring that the research is behind what we are doing.

Dr. Noreen O'Leary

I would add there, in respect of the assessment of needs piece, that when clinicians and teams do diagnostic assessments through assessment of needs, they are comprehensive processes and a lot of time is spent with families and with the child. Again, families share a lot of information with us that is very personal and can sometimes be somewhat traumatising for them because they may be reliving some of the hardest and challenging times in their lives. It is certainly one of the difficult aspects, sitting in a room with a family and giving a diagnosis and telling them their child's needs. Inevitably, the follow-up question is when can we start to address that. As a clinician, saying that you do not know or that it is going to be however many months or potentially years and explaining to families that even though it is written in the documentation of assessment of need, it is just about assessment not intervention, seems counterintuitive. To diagnose a need and then not be able to address is a huge issue and flaw in the system around assessment of need. As Ms Moran has said, we need a comprehensive way of doing diagnostic assessment but we also need to be able to follow that up because it can be very challenging for families and parents. For some, having the diagnosis in itself can be helpful but for many families, they need that to be followed up with action. They need to be able to build on those relationships they have developed with the clinicians and not to be coming back in two and half years' time to a whole new group of people.

Gathering the data from on the ground was also mentioned. One of the things that is mentioned in the roadmaps that is for roll-out this year, is an information management system for disability services because at the moment, we do not have anything on a national level.

That is even quantitative data in terms of numbers. It is acknowledged - I do not think I addressed it earlier with one of the Senator's colleagues - that there is a discrepancy between figures in the action plan and in the road map. In the road map, it is caveated in the figures that are quoted that there may be discrepancies because, basically, it is manual data collection as opposed to having an electronic integrated system. That management system is meant to be rolled out this year. It would be fantastic within that if as well as quantitative measures of numbers of children and numbers of appointments, we could actually gather more qualitative or descriptive data around types of practice, what kinds in interventions there are and what the goals are for children. I know from linking in with some parent representatives that families would love something more technology-focused where they could upload information about their child. They could access their goals and link in with the teams rather than where families say they get questionnaires every time and have to refill them out. That is a huge amount of administrative work for a family who are doing a lot. Every time people retell their story, it is very emotional.

Senator Erin McGreehan

It is very hard.

Dr. Noreen O'Leary

It can be retraumatising. Something like a really well-integrated information management system would be really helpful because as the Senator said, clinicians on the ground may not have the time to look into it. If the data was there, however, researchers like us could look at this, analyse it, start to see patterns and trends, identify problems and pull out things that are working well. The Senator raised the point about whether we have faith in the HSE. Ultimately, the HSE is like everything; it is people. People on the ground and people who are tasked with this want to make this better for I am sure many different reasons. People do want this to get better, however. If we can engage in dialogue and have that meaningful open dialogue where people are willing to listen and take it on board, we can improve things, but we need to be able to have that dialogue.

Senator Erin McGreehan

I thank Dr. O'Leary very much.

Senator Eileen Flynn

Dr. O'Leary and Ms Moran are very welcome to the committee this evening. It has been mind-blowing to listen to their remarks and read some of the documents.

Yesterday, the Ombudsman for Children launched a report that talks about access for children into education. One of our biggest worries is children with additional needs accessing education. It is absolutely remarkable that we are still seeing that these days in Ireland. People can have all the assessments in the world and be diagnosed. I welcome the Minister's announcement today about people being able to get a diagnosis from the private sector and get back the money. That is very welcome. Being diagnosed is one thing but people need follow-up treatment and support in preschool and primary school. I know we are trying to be positive, and even in the research to look at the positive. However, the negative outweighs it for children with disabilities within this country.

As a sitting politician with responsibility for policy and legislation for children with disabilities and additional needs, I do not know who to go to. I am talking about children of nearly five years of age. I am trying to suss it out today to ask where this report lies. The Joint Committee on Children, Equality, Disability, Integration and Youth is looking at it in July, which I welcome. That committee should look at it. We as a committee need to look at it too. This is about access to special schools and special classes for children with additional needs. We just do not have enough of them. I believe anybody would agree. I would imagine it is the same for both of our guests as it was for me when I did caring for people with special additional needs in Ballyfermot college. I know it is different - a special needs assistant, SNA, is obviously different from a speech and language therapist. There are different roles for carers working with children and people with disabilities, but people go into it because they give a damn and because they care and want to work with people with additional needs. We do not go into these professions saying that we want to go to Australia or New Zealand. Unfortunately, people who work in the sector are not valued. They are paid absolute buttons and work maybe 15- or 16-hour shifts. How is that sustainable?

I do not really have questions because the rest of them have been touched on and it is quarter past seven on a Wednesday evening. We have moved disability from health to more of a social model. I want it to be in a social model from speaking with people with disabilities on the ground and with organisations as well. That is what people want. It is what parents want, etc. We have heard that numerous times at this committee. Again, however, it is about who has the responsibility. The Ombudsman's report was launched yesterday. I sit on the Joint Committee on Education, Further and Higher Education, Research, Innovation and Science. I brought that report to the education committee and I was told - not by the education committee but by people I work with - that it would be for the Joint Committee on Disability Matters and now it is with the Joint Committee on Children, Equality, Disability, Integration and Youth. We have too many Ministers and not enough action. I have said this numerous times. The Department of Children, Equality, Disability, Integration and Youth will say it lies with the Department with responsibility for people with disabilities, and that Department will tell us to go to the Department of Education. Therefore, we really are failing children. Do not get me wrong; I know we have come a long way as a society in the last 30 years and even in the last ten years with regard to people with disabilities and additional needs. However, when I hear the word "disabled", we disable people; society does that. The State is one of the biggest problems. That report yesterday was absolutely daunting for me to read through and ask how this is happening and why no one is going to take responsibility for this.

Moving from the social model, what is our way forward? I do not have a question as such. I am just giving remarks really because I do not know the answers. We could sit here until Christmas and talk about what we need to do. There is a lot of research, which I obviously welcome. We can have research the length and breadth of this room, but unless we implement the recommendations, the research is not worth a light. It is really about that implementation. How do we implement what we already have instead of recreating the wheel? How will we be able to make a decision to say it is actually the Minister for Education who has the responsibility for access to education and not the Minister of State, Deputy Rabbitte? How do we do that? How do we decide and say we know where we are going? There are too many fingers in pies. We are perhaps trying to achieve too much and getting very little done. We are going to be in the same place - we have this every single year - where we know there are numerous children who are being denied places in education in primary and secondary schools. I would love to know how we deal with that problem with the Department of Education. It is not a problem with people with disabilities.

Dr. Noreen O'Leary

The short answer to the Senator's question about who has responsibility for this is that in a way, it is everybody's responsibility. That does sometimes then create the problem of who is responsible. To meaningfully address change, we need all the stakeholders involved. We need the Department of Education, the Department of Health and the Department of Children, Equality, Disability, Integration and Youth. Within that, however, and I do not know the answer to this, there does ultimately need to be somebody who can direct resources and take decisions to say this is the direction we are going and here is what we need from the different stakeholders, even if it is to look at the evidence and research. As the Senator said, it is not that there is necessarily a lack of research in the area, but somebody can say we are going to look at it and this is what we agree is the strategy we are going to try. We pilot it, gather the data, review it and see whether it is working. If it is, great, we can move further on with it. If it is not, we address it, tweak and it and figure it out. However, sometimes there is a sense, and this perhaps comes across in the progressing disability services, PDS, programme a bit, that we have committed to this model and we will continue to move in this direction, but we actually need to pause and take stock. School placement is one of the most stressful issues for families around their children.

It is such a huge part of a child's life - their social, developmental and future life. So much of it comes back to those educational experiences they have. I have experience of working in special preschools, Ms Moran worked in special primary and post-primary schools, and we see the impact of those experiences. There is a lot of debate at the moment about the role of mainstream versus special classes versus special schools. Our take on it is that it is what works best for the particular child-----

Senator Eileen Flynn

Dr. O'Leary referred in her opening statement to meeting the person and each individual child where he or she is. Some children are able for mainstream schools with SNAs.

Dr. Noreen O'Leary

Absolutely.

Senator Eileen Flynn

Some children need that one-to-one support in special schools. It is, however, a shambles. I see it as segregation, whereby we put disability in with the disability committee whereas it is the responsibility, in my opinion, of the Department of Education to make sure that every child has equal access to education and has free education. It is absolutely remarkable.

Ms Geraldine Moran

It is complex. The Senator has identified that herself. It is across a number of different environments and different areas. Because it is so complex, it will not be so easy to solve. As the Senator is implying, who has to step up to the mark here? Each of those areas have to step up. These are children whose disability does not come first. They are children of the State. They have a right to whatever they need, so this has to be across all environments.

Senator Eileen Flynn

I do not know, Chair, if the committee could agree to write to the education committee to see if it will look at the Ombudsman for Children's report on access to education for children.

An Cathaoirleach

We will have the Minister of State at the Department with responsibility for special education in on 25 June, so we could have it done on that day.

Senator Eileen Flynn

Okay, Chair. Thank you.

An Cathaoirleach

I congratulate you, Ms Moran and Dr. O'Leary, on the paper you have done and thank you for the very challenging remarks and the contribution you have made to the questions and comments of members. It has been a very engaging meeting, and you certainly have a depth of knowledge on the subject matter. Each and every one of the meetings we have further challenges our committee as regards the services that are provided for people with disabilities, particularly young people. Your paper has challenged the fundamentals of how the progressing disability services programme is organised, and with that then are the outcomes at the other end. I congratulate you on that. I would like to ensure that you would keep in touch with us on this and further engagement on it.

It would be remiss of me not to say it is always great to have before the committee witnesses who know where Kishkeam is. That is very important because, to me, it is the centre of the universe. I thank you sincerely, Dr. O'Leary and Ms Moran, for your work and wish you continued success. Keep in touch with us because it is important that we have research-based outcomes as we go forward. It challenges our system too.

As regards our members, I was a bit concerned as the Dáil was adjourning earlier than usual this afternoon, but we had a full attendance at the meeting, so thanks to the members for their dedication to the work. Thanks, of course, to our team for keeping everything running relatively smoothly.

The joint committee adjourned at 7.14 p.m. until 5 p.m. on Wednesday, 29 May 2024.