Are the minutes of 27 February agreed to? Agreed. In regard to EU scrutiny, can we agree that we are going to seek further clarification on COM (2024) 27 but COM (2024) 29 warrants no further scrutiny. Is that agreed? Agreed.
Allocations of Special Education Teachers: Discussion
Sitting suspended at 11.24 a.m. and resumed at 11.26 a.m.
On behalf of the committee I welcome Mr. Adam Harris, chief executive officer, and Mr. Michael O'Flanagan, head of community support, AsIAm; Dr. Fidelma Brady, head of education, and Mr. Turlough Kelly, communication and advocacy manager, Down's Syndrome Ireland; and Ms Derval McDonagh, chief executive officer, and Mr. Guillaume Jacquinot, policy co-ordinator, Inclusion Ireland.
I would not like to say this early in the morning or late at night. It is better to say it now. I hope I got that correct. The witnesses are here today to changes to special education teacher, SET, allocations. This has been in the media for the past number of weeks.
The format of the meeting is that I will invite the witnesses to make a brief opening statement in the following order: Mr. Harris, Dr. Brady and Ms McDonagh. This will be followed by questions from members of the committee. Each member will have approximately six or seven minutes to ask questions and for witnesses to respond. Those who must leave will be in time to get away. Members will direct the questions to the witnesses. I will not have to intervene. If any witness wants to indicate to me I will bring them in. The committee will publish the opening statements on its website following today's meeting.
Before we begin, I remind members of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official, either by name or in such a way as to make him or her identifiable. Witnesses are reminded of the long-standing parliamentary practice that they should not criticise or make charges 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 statement is potentially defamatory in relation to an identifiable person or entity, they will be directed by the Chair to discontinue their remarks and it is imperative that they comply with such a direction.
I now ask Mr. Harris to make his opening statement, followed by the other witnesses, Dr. Brady and Ms McDonagh. They have five minutes each. The countdown clock is under the television screens.
Mr. Adam Harris
I thank the Chair and committee members for the invitation to appear today. I wish to recognise the extensive engagement we had with senior officials in the Department of Education yesterday. While not a substitute for a timely consultation, the engagement was welcome. However, we continue to have significant concerns relating to the SET allocation model. As members may be aware, AsIAm is Ireland's autism charity. At least one in 27 children of schoolgoing age now an autism diagnosis.
A majority of our young people attend mainstream school, with significant numbers also enrolled in autism-specific classes or in special schools. While this may mean a shift in where our children learn compared to the past, it does not necessarily indicate a fundamental shift in terms of inclusion. Indeed, in our most recent Same Chance report, 23% of our community members reported that their child did not have a suitable school place which met his or her needs and 61% did not believe, based on experience, that our education system was inclusive or accessible. For many the battle to secure a school place is followed by an endless battle for supports and reasonable accommodations in the face of exclusionary practices and the constant threat of reduced timetable, placement breakdown, suspension or expulsion. Our learners do not enjoy the same chance as their neurotypical peers. We frequently hear the Department hailing the overall success of Ireland's education system and its performance internationally but this simply has no relevance to the experience of so many children in our community. Understanding this background and context is essential to understanding the sense of a breach of trust many families in our community feel by the Department of Education’s announcement that the current SET allocation model would change, removing complex needs as a relevant factor in the front-loading model, without any forewarning, engagement or consultation with those most affected. Our families have little reason to trust the system, least of all when it has attached zero weight in its model to the voices and experiences of our community.
The SET allocation model, as introduced in 2017, is based on NCSE policy advice. That policy advice was crystal clear that the number of children with what it describes as “complex needs” within a school should form a significant proportion of the allocation model but this was deviated from behind closed doors. This simply would not happen to teacher representative organisations or management body groups and it certainly should not happen to those for whom the Oireachtas voted these resources. It can never happen again and we would ask this committee to secure assurances from the Secretary General of the Department of Education on how disability stakeholders are consulted on every relevant issue and announcement in a timely manner into the future. The UNCRPD is clear that disabled voices must be at the heart of decision-making processes which affect our community. What has taken place is totally unacceptable. It has led to a communications crisis which has caused significant stress to families and appears to have contributed to a return to soft barriers, as families report schools telling them that they can no longer be assured of a place in September or of ongoing participation in mainstream education as a result.
It is for these serious reasons we have asked the Department to pause the SET allocation model for real consultation and to guarantee that no child who needs support will lose out. We are told a pause is not possible and that school-level data cannot be used. However, just a few weeks ago the Department was arguing the same data was acceptable for school staff to conduct a statutory educational assessment as part of the assessment of need process. We are told that the data the Department is receiving from the HSE will no longer allow for the use of the existing SET allocation framework and that there is no other way. That to us sounds like a case of asking children to conform to a broken system instead of creating an effective, child-centred approach into the future. This change comes at a time when emerging needs and identified complex support needs within our schools have never been greater and are predicted to continue to rise. While we acknowledge the Department is not removing resources from the system and has secured additional resources this year, increased investment is simply not keeping pace with need and that fundamental point needs to be acknowledged before we can even consider how resources are then allocated. At present the Department will say that schools have the resources to meet all needs within the school but schools will tell families that they do not have the resources they need to meet their child's needs. Our children are caught in the middle, with their needs not being met on their own merits or in terms of how they relate to the needs of others in their school. This is not a rights-based approach. We note that the historical data and weighting related to complex needs will now form part of the allocation model which relates to literacy and numeracy. However, we do not believe this will be sufficiently representative and have concerns that literacy and numeracy are not relevant predictors of learning needs for many autistic students with complex needs.
Finally, we urge the committee to closely examine the proposed exceptional review process which the Department is relying on to assure families that no child will go without. We are not satisfied that this process will be inclusive or timely but even more significantly, we are concerned it is an unbudgeted and uncosted appeals process. Nothing in our experience would lead us to believe that a child’s needs will be prioritised over budgetary constraints in a system which lacks transparency for families by creating a blame game between schools and the Department. Any allocation model which is to succeed must have a credible and wholly independent appeals process and must be accompanied by very strong safeguards to ensure the allocation reaches those who need it most. This must include a right not just for schools to appeal to their allocation but for parents to appeal the level of support provided to their child within the school.
I thank Mr. Harris. Dr. Brady is next.
Dr. Fidelma Brady
On behalf of Down Syndrome Ireland, I thank the Joint Committee on Education, Further and Higher Education, Research, Innovation and Science for inviting us to speak here today. My name is Fidelma Brady and I am the head of education at Down Syndrome Ireland. I am joined by my colleague Mr. Turlough Kelly, the communication and advocacy manager with Down Syndrome Ireland. I would echo a lot of what Mr. Harris has already said.
Down Syndrome Ireland, the national charity which supports thousands of Irish people with Down's syndrome, is gravely concerned by the content of the circulars issued by the Department of Education recently relating to the SET allocation for each school from the 2024-25 school year until further notice. In the circular it is proposed that the category of “complex educational needs” be removed as a criterion for allocating special education teaching hours. Based on our own analysis of the proposal, feedback from our members and the results from various surveys, the proposed change will have a potentially devastating effect on many pupils with Down's syndrome and their educational attainment. We are basing this conclusion on our understanding and long experience of supporting students with Down's syndrome at all levels of the education system.
A child or young person who has additional support needs arising from one or more complex factors or multiple factors is deemed to have "complex needs". To say a pupil has complex needs is not just a matter of terminology; it is a very real and important description of that pupil’s educational needs and the supports they require. Those needs are complex and multifaceted. When we look at children with Down's syndrome, we must consider both the intellectual disability and the chromosomal disorder or disability.
The chromosomal disorder in itself has multiple factors. It affects all parts of the body so a greater awareness of physical health is needed. Specific motor and sensory issues are common, with a very significant additional impact on speech and language. The intellectual disability and chromosomal disorder together both contribute to delayed motor skills, health issues, auditory and visual differences, speech and language disorders, short-term memory difficulties, consolidation and retention problems, difficulties with generalisations, thinking and reasoning as well as concentration and attention challenges. The combination of all of these factors must be considered complex for children with Down's syndrome and the very complexity of their needs must be the basis for the educational environment we provide for them. There is no possible one-size-fits-all approach that respects and addresses those needs. Quite simply, many pupils with Down's syndrome will not thrive educationally if their complex needs are not specifically addressed.
Research has found that academic progress and achievements are better for children with Down's syndrome in mainstream school once adequate educational supports are in place. The majority of children with Down's syndrome now enrol in their local primary school, with many progressing to mainstream post-primary school. A recent internal survey conducted by Down Syndrome Ireland prior to the issuing of the circulars indicated that 62% of our members who responded were enrolled in mainstream schools. Many parents have since expressed their concern and their intention to move their children to a special education setting due to the removal of the category of complex need for SET allocations. A survey in 2023 found that 35% of families who had already moved their child to a special school did so because the supports provided in mainstream schools were not adequate. If the supports provided then were deemed to be inadequate, how will less capacity enable schools to meet the needs of this most vulnerable cohort of children? The Department's directive indicating that the most support should still be directed to those children with the greatest level of need has implications for all children and not just children with Down's syndrome. We must remember that the learning experiences of all children will be impacted by this and not just those with special needs. Things are going to get worse if resources are spread more thinly.
While we have had engagement with the Department of Education since the circular was issued, I would like to take this opportunity today to express our concern and disappointment with the complete lack of consultation between the Department of Education and disability groups such as Down Syndrome Ireland.
While we of course respect the necessity for unions and boards of management to be a big part of the consultation process, organisations such as those represented here have a wealth of knowledge and of members’ experience to draw on. Had we been involved in the consultations at an earlier date, the concerns we are raising today would have been raised at a much earlier stage; parents would have had more opportunity to reflect, respond and prepare; and they would not now be in the position of urgently contacting public representatives to safeguard their children’s educational future.
All in all, we consider this action of the Department of Education to be very detrimental for our members with Down's syndrome. Every year, between 130 and 150 babies with Down's syndrome join our population. In the 1980s, the average life expectancy for someone with Down's syndrome was about 25 years. It is now about 60 years. The Department of Education, by failing to provide adequate teaching supports in childhood, is kicking the can down the road. It is not just impacting on the lives of children with Down's syndrome right now but is storing up social and economic costs for the future. Students with Down's syndrome have the right to be educated in their local mainstream school. It is not unreasonable to expect that any additional support and resources required should be provided.
I thank Dr. Brady. I invite Ms McDonagh to make her opening statement.
Ms Derval McDonagh
I thank the committee for the opportunity to exchange with it on this key issue. I am the CEO of Inclusion Ireland and I am joined today by Guillaume Jacquinot, a policy co-ordinator at the organisation.
Inclusive education is a core pillar of our work. We believe that inclusive communities have their beginnings in education, and our vision is for a time when all children get to go to school together. This vision should not leave out any child, from those who require a small amount of support to access their rights to children who require intensive support. Education rights should be universally applied to children; they should never be negated or denied based on a child's support need. The issue we are here to discuss might be specific, but it also shows a general level of disconnection between policy at departmental level and the lived experiences of disabled children and their families who are constantly fighting for the recognition of their fundamental rights.
The removal of the criterion “complex needs” from the allocation of additional resources to a school is a worry not only for the children and parents but also for schools. We contend that the content of this directive is not compliant with the UN Convention on the Rights of Persons with Disabilities, ratified by Ireland in 2018, while the manner in which it was communicated and relayed publicly is quite far removed from the disability motto “Nothing about us without us”. The State has an obligation to consult the people most affected by policy positions and actions. In this instance, the State has failed to do that. We agree with AsIAm's position that we must be assured that children and their families will be consulted and that a formal process will be put in place to ensure stakeholders such as us have formal ways of engaging with the Department and shaping policy. While the large increase in budget for special education is often presented at a national level by the Government to positively present its action, the impact of this investment is not carefully reviewed, evaluated or monitored effectively. There is a mismatch between what is presented publicly and the lived experiences of children in our schools.
The committee has an opportunity to see in our briefing document some of the findings of a survey we ran jointly with AsIAm and Down Syndrome Ireland last week, which gathered more than 1,300 answers from families. It captures their reactions to the new allocation model suggested by the Department. The snap poll gathered 1,344 responses and showed the impact of a lack of consultation and communication. Approximately 85% of respondents had a child who was receiving special education teaching support in school, while 94% believed that any reduction in special education teaching hours would impact on their child's ability to learn and participate in schools. A total of 74% of respondents felt they did not have a good understanding of the changes proposed by the Department and 96% were concerned the change would see their child's school lose resources.
The parents were also given an opportunity to outline the basis and nature of their concerns, with a number of key issues emerging. They included a lack of sufficient resources in the system prior to any change, with children already struggling with the resources provided by the existing system, and concerns about any reduction in support on individual children in schools. Another concern was that the proposed changes demonstrate a lack of understanding of the experiences of children with complex needs, and there was a significant concern the changes would create barriers to accessing mainstream education, including soft barriers to enrolment. There was a concern about the impact the change would have on children with complex needs due to start school in September, and there were fears as to why the Department made the decision and the basis of the proposed model, including the use of sTen literacy and numeracy scores to allocate resources.
I will highlight a couple of quotations from family members in the survey. One said they were thinking of their child’s future and that, as the parent of a child with Down's syndrome, they were concerned the removal of special education teaching hours will affect their child's learning and development, which, in turn, will affect her chances of progressing with education in line with her peers. They said any changes could impact on her chances of living an independent and autonomous life, given that in schools we learn all the skills to progress into adulthood.
A loss of resources for schools was also highlighted through the survey. One teacher stated their school had already lost resources, yet it has a greater level of complex needs than ever. They asked how the school is to continue to support people when the algorithm for providing hours was based solely on literacy and numeracy. They called this disgraceful. Many of these findings tally with concerns raised in a petition signed by more than 700 principals making up the National Principals Forum.
The single biggest theme we find in all our work is that of developing trust. Families need to trust that their child will get the support they need in their local school, while schools need to trust they will get the support and resources they need in supporting all children in their community. The only way to build this trust is through developing a cross-governmental plan for inclusive education where we can see the commitment of our leaders and evaluate our progress through improvements in the quality of the educational experience that children receive.
A survey recently published by Inclusion Ireland got more than 500 responses from parents sharing their children's lived experiences at school and only 14% said their child was thriving at school, while 45% of parents said their children were being failed by the educational system as they face multiple barriers to access their right to school. They contend with either a lack of appropriate supports at school, a reduced timetable, emotionally based school avoidance or other distressing experiences. A snap poll taken by AsIAm and Inclusion Ireland two weeks ago revealed that 27% of children had experienced restraint and 35% had experienced seclusion. The disconnect between policy and their experiences has never felt so acute. Last night on "Drivetime", two parents shared their child's story of seclusion and restraint in school. We have been shining a light on this since 2018, yet we are still at only the pilot stage of developing guidelines for schools. What will it take to make us take this seriously? How many stories must children and families tell publicly and at what cost to them?
The concluding comments of the State’s recent review before the UN's economic, social and cultural rights committee highlighted that we are missing disaggregated data on the experiences of disabled children in school today, and concern was expressed about our current system of education when we should be looking towards advancing a vision of a more inclusive system.
I thank Ms McDonagh but we are out of time.
I thank the witnesses for attending. I also thank my committee colleagues and the committee secretariat for ensuring we are all here today having this conversation, because it is very important. Ms McDonagh is absolutely correct; 700 principals have stated they are concerned about this move. To my mind, one of the fundamental issues with the proposed reallocation is that, on the one hand, the Department is saying to these 700 principals that it trusts their judgment when it comes to allocating their resource hours within schools and that they will do what is best for the children who are there to be educated. On the other hand, it is completely discounting the concerns those same individuals are raising with respect to the reallocation of SET hours. That makes absolutely no sense. We cannot say to a group of professional educators that we trust them while also saying we do not trust them when it comes to something else. That is wrong.
Another issue that is wrong, which has been touched on at this committee, relates to trust, not least when CDNTs are brought into the conversation.
From recollection, the Department said roughly 5% of the information was coming forward from CDNTs. The trust of parents in a system that has clearly been failed by the CDNTs will in no way be reinforced because the Department will then take on that failure and almost replicate it through the education system.
I have some very specific questions because we could speak about this for the day but unfortunately time is not on my side. The Department will say that currently there are 14,600 special education teacher, SET, staff in the system. That is based on the 2024-25 enrolment. However, that enrolment figure is compared to 2013 or 2014, the number of students in our schools, both mainstream and special, has actually increased by 20,000. The Department will also say that it has an advocacy forum for stakeholder engagement. Are any of the bodies represented today members of that advocacy forum? If they are, what has the engagement been through that mechanism?
I have a specific question for Dr. Brady because the issue she raised about parents making a choice to send their child to a special school is of great importance, particularly in light of the NSCE report published in January. To her mind and based on her experience of working with parents of children with Down's syndrome, what extra supports are they looking for to ensure their child can stay within a mainstream setting and not be put in that very difficult position of having to make a choice between mainstream - perhaps with their peers in their local community - or a special school that would remove them from their local community and their peers?
These are the two specific questions I have for each of the witnesses. Often what happens when we talk about special education is the terminology gets a bit confused. From the witnesses' experience, what is the difference between an SET and an SNA and the role of each of those positions? Second, what does a child with complex needs in the classroom actually look like? The child may be really good academically but have complex needs. What is the relationship between the two of them, and that child enjoying their education and being a full participant in their classrooms?
Dr. Fidelma Brady
I thank the Deputy. She asked the main reasons parents are looking for and having issues with and the worry of keeping their children in mainstream schools and looking to change them to special classes or special schools. The bottom line is there is a fear their child will not get the resources they need. We are talking about this new departmental allocation going in under the pillar of literacy, numeracy and STEM scores. Children with Down's syndrome are a lot more than literacy and numeracy scores. Their needs are so complex. It ties into the Deputy's other question related to SETs and SNAs. The myriad of children with Down's syndrome's needs can be so immense that simply saying we will give them a little bit of extra help with literacy and numeracy will not do anything. It will not work. That fear parents have is the removal of criteria for complex needs not being automatically recognised as a specific pillar within the allocation. Parents are afraid that their child will actually end up just getting maybe a very thinly-spread resource allocation or SET allocation in the school which is way too small for their child.
With regard to SETs and SNAs, obviously we are all very much aware the class teacher has the primary responsibility for children's education regardless of whether they are typically developing children or children with special needs. Realistically, that class teachers may have between 26 and up to 36 other children in their class so they rely a lot on the SET for additional supports. There really should be a partnership between the class teacher and the SET so they are not both working in isolation. The SNAs, as we know in this country, are there for care needs only. It has been a long time since I was at a consultation where they looked at maybe revising the role of the SNA and developing it. We have to keep that in mind because it is a very important issue. The volume of support provided by SNAs is huge.
Parents have a fear if they are going to remove the SET allocation, thin it out and spread it out a lot more thinly, that it will impact the SNA allocation as well. I can understand where they are coming from because automatically the reaction is, "Right if it will not happen in mainstream I am changing my mind and will not enrol my child in a local mainstream school and will look in special classes in special schools." That then is another issue because very often there are not enough of them. A parent contacted me as late as this morning saying that they are now not willing to send their child to a mainstream school. They cannot get a place for that child in either the special class in another school in the area or in the local special school. I should say the "local" special school because they will have to drive for an hour and 25 minutes each way to get to that school. It is a no-brainer. Let us put the supports into mainstream and support the children in mainstream in their local area with their peers and where they will be living in the future.
Mr. Adam Harris
I thank the Deputy. The first point she made is really important because while we acknowledge there seems to be very significant issues in getting the required data from CDNTs, from our engagements with the Department we have not been able to ascertain any issue with the fundamentals of the approach that had been in place. What we are doing is throwing the baby out with the bath water. A system is failing so we are moving away from the system that people had confidence in as a result of that. That is where we need to ask ourselves what the alternatives were and I will come to that in a minute.
Indeed, there are more than 14,000 SETs within our schools and we recognise that has increased significantly in recent years. When the model started, one in 65 children in our schools had an autism diagnosis. We now know that at least one in 27 children do and that is before we recognise many more are on a waiting list. We know this data is not an outlier. It is exactly what we see across Europe. The reality is any increase in investment is not a real increase. It is struggling to keep apace with the level of demand that is growing.
In terms of the advocacy forum, this emerged on the back of the Covid-19 pandemic where we raised very similar concerns about the education of children who really could not access learning at home. The only voice that was not at the table around the reopening of schools was very often the children most affected by that decision. The idea of the advocacy forum was meant to be a no-surprises piece. It was meant to be that the voice of the child from our community would be heard at the same time as those powerful stakeholder groups. The advocacy forum has not worked in that regard. There continue to be surprises whether it is this issue or the special education centres from 18 months ago. We really need to see a line drawn under that now so that we are seen as equal stakeholders. That is why I think we need a formal reassurance of that from the Department arising from today.
As somebody who had an SNA, I have huge time for the work they do but there is a difference in the role. SNAs are there to meet care needs. Special education teachers are there to support people in accessing the curriculum. What is different though is transparency. With an SNA families are often very aware whether their child has access or not. What the SET allocation model has fundamentally done is created a lack of transparency for families. They do not know what their child is entitled to. They do not know what their child is receiving. The Department places such an emphasis on the student support plan but the reality is so many of our young people simply do not have one of those so it is very hard for families to keep abreast.
Finally, with regard to complex needs as an organisation AsIAm believes we need away from seeing the child as having complex needs towards the supports the child might need. It might be more significant in addressing the barriers they face. Perhaps that would be the child using an AAC device, a child with a co-occurring diagnosis, or a child who has sensory needs that are such that accessing the curriculum in the mainstream classroom is challenging and they need more support. One of the things that is frustrating on which we can all agree is we should demedicalise the process. We should all agree we should focus on education need as opposed to medical or care need in the context of this discussion. The Department has a definition of this. Last summer, page 7 of the summer programme guidelines clearly defined what complex special educational needs are
We, therefore, have no idea why a kind of mystery has been created around that topic whereas we seem to have all had a shared understanding only last summer. The data that would help schools determine based on those guidelines is the data the Department wanted schools to use as part of a statutory assessment of need process but now we are told does not have a relevance or is not useful for this process.
Mr. Michael O'Flanagan
To build upon a point Mr. Harris made, yes, we met with the Department. On the back of the survey, we sent it a list of questions parents asked, and it sent us a response to those questions late yesterday evening. I will read out question No. 2: can the Department guarantee my child will not be without this resource this coming September? Likewise, question No. 8 was the following: I understand that the one with the most needs gets the most resources, but what happens to the kids who mask or the ones who fall through the cracks? In the responses to both of those questions, the Department referenced the continuum of support. Building on what Mr. Harris said, we know in the casework we do and the support we give families that families do not necessarily know about the continuum of support model. That instantly puts them on the back foot or at a disadvantage. In a sense, having that information is key to them being able to support their child. From a practical standpoint, it is a practical support that the school should provide. The Department is putting a great assurance on this continuum of support model, which we know is not necessarily being implemented across the board in cases we have dealt with.
Ms Derval McDonagh
I will respond to the first question on investment in education. We frequently hear about the increases in the number of SETs, SNAs and so on. As Mr. Harris mentioned, we were starting at a very low base, so we cannot be at a stage yet where we are congratulating ourselves for the investment when really we are playing catch-up. In addition to that are the issues faced by children during Covid, which we have not recovered from. We cannot pat ourselves on the back yet for the investment. Hand in hand with that, I am always perplexed by the fact that we congratulate ourselves on the investment but we have yet to look at the education outcomes for children with intellectual disabilities and autistic children within the systems we have set up. What we hear from family members every day is that there is a lack of ambition for children. The focus on literacy is not there. The focus on what will happen after school and how students should have a right to a good life and perhaps go on and get a job, or not, or just have a high-standard, high-quality education is just not in the system now. We need a careful analysis of where this investment is going and what it is achieving for children. We should be looking at the highest quality education for disabled children, not patting ourselves on the back because a child got a school place. That is the lowest bar we should set at this stage in the game. It is criminal that children are applying to 20 or 30 schools just to access a basic right that is in our Constitution. It is criminal that families are spending their days, weeks and months fighting for basic services and supports. Every time I hear “investment”, I want to hear about what it is getting for these children. They deserve the absolute best and, unfortunately, our survey results tell us they are not getting that now. There is a disconnect between what the policy is saying and what children are experiencing. When only 14% of children who respond to our survey are thriving in school, we know there is a real problem that needs to be looked at.
To the Deputy’s point on complex needs, the terminology is “complex needs” and, as Mr. Harris pointed out, the focus is on the child as having complexity as opposed to on the system that needs to figure things out, provide the reasonable accommodation and step up and support the child. It is not the child who should have to bend and flex to suit the system; rather it is the system that needs to bend and flex to suit the child. We need to move way beyond this conversation about putting the onus on the child to change or putting the complexity on the child and start looking at the grown-ups in the room and what we need to do to make it better for them.
I ask members and witnesses to keep it within the seven minutes because there are more members who wish to come in.
I thank the witnesses for coming in. It is heartbreaking to hear that people are losing trust - "losing" is the wrong word – have lost trust throughout this process. I am thinking of siblings, where parents now have to make the difficult decision that they do not feel confident their child can go to a mainstream school with their siblings. That is heartbreaking.
Ms McDonagh made the point about this no child left behind model being followed elsewhere. It is not the model we want here. It is about meeting each individual person where they are and meeting those needs. That is what has been good about the education system. Reading through everything, that overemphasis on literacy and numeracy is to the detriment of our education system. I firmly believe that a school is a training ground for life and it is to set children up for life. As Dr. Brady said, the life expectancy for someone with Down’s syndrome is up to 60 now. We are not seeing an education system taking that into account and getting the best for everyone.
I canvass a lot and the number one issue that comes up across canvasses, whether rural or urban, is special needs provision not just in school but generally. We hear all the time about this massive investment with a quarter of the education budget is going into special needs. However, I know and every parent I speak to knows that outcomes do not match that. It is big for the witnesses to say exactly what needs to happen but it is clear that massive mistakes have been made by the Department of Education in this process. Usually I would say that once trust has broken down, it is impossible to rebuild it, but I think it is possible to rebuild it. We need to now see what the concrete steps are to rebuild that trust. Perhaps it is to change some of the decisions that have been made. We do not like the term “complex needs” but it has served a purpose up to this point to get the resources. Let us change the terminology but let us keep the underlying principle that it meets each of those children’s needs.
I ask the witnesses to expand on the following. A first meeting happened yesterday. What more now can happen to build that trust from this point on? That is my fundamental question.
Mr. Adam Harris
We talked much about impact, outputs and what we are getting for our investment. An important point to bring into the discussion is our groups have all raised concerns about the governance of the model. At present, a large volume of hours are front-loaded into our schools but parents have little say or agency within this process. We know of bad practice on the ground. For example, we know of second level schools that are using their allocations not for children who need them but to reduce the pupil-teacher ratio in higher level subjects at leaving certificate level. It is critical to understand that families are caught between two pillars.
What we heard repeatedly from the Department yesterday is that it is confident every school has the resources to meet the needs of the child. If that is the case, the Department should not have any fear of a robust independent appeals process and should not have any fear of a process that gives a parents a right to appeal, not just schools. That would be a critical step to restore trust, as well as creating that pause to listen to families – not brief us but consult us.
Finally, I have concerns that while there have been meetings, and another meeting is scheduled for next week, I have little faith that we will not fall back into the same practice because this has happened so many times. That is why we need to seek in black and white a commitment from the Department on not just the fact it will consult us but how, when and at what level into the future.
Yes, and make changes. You cannot just consult two people and say “I have done this. Let us tick a box now.” It is about making those changes. I thank Mr. Harris. Those are concrete actions.
Mr. Turlough Kelly
I will speak to the issue of trust. There is something of a perception within the Department that there is a degree of scaremongering going on from various quarters. Our experience in Down Syndrome Ireland is that the initial concerns raised with us came from parents reading the circular, noticing that complex needs was not listed as a criterion and drawing what were in the circumstances quite plausible and valid conclusions from that.
None of the engagement we have had with the Department to date has put me in a position where I could, in good conscience, go to my members and say that those concerns are unfounded, or that the specificity of complex needs is addressed elsewhere in the system. From that, it is possible to extrapolate that this breakdown in trust happened over a long period of time. I do not think that any of the engagement from the Department to date has done nearly enough to address it. We really need a definitive statement of clarification from the Department on its position regarding complex needs and the fact that it feels they are addressed within the criteria as they are. Nothing that we have got from the Department to date has established that definitively to our satisfaction.
Ms Derval McDonagh
I thank the Senator for her questions. Regarding establishing trust, first and foremost the Department needs to consider whom it is communicating to when these circulars go out into the broader community. I believe it feels it is communicating directly with schools and school communities, but actually the impact is on children and families as well as on schools. It needs to consider how things are phrased, putting information in a clear and accessible format so that everybody can understand. Before that, there should be a careful consultative process. As the Senator said, it is not just about hearing the data; it is about really engaging with it, offering our advice and feedback, and having some of that taken on board in clear and concrete ways. As Mr. Harris has outlined, in order to develop trust, there needs to be a proper footing for how this engagement happens. We need clear and concrete steps for how we will have further engagement with the Department. People like us need to be included as part of that process.
Under public sector duty and the UNCRPD, the Department has a duty to communicate not only with schools but also with children and families. We would like to see more evidence of that in future.
I apologise that I was not here for the presentations in the earlier part of the meeting. Unfortunately, I will need to go once our conversation is finished.
I used to be a school principal and the best advice I ever got was that I should place the child at the centre of all my decisions. In all interactions with the board management, the patron body, the Department of Education, staff or parents, as long as there is a child at the centre of a principal's decision, then no one can ever question their integrity. They will not always win, but they should keep that focus. Since I have gone into politics, I have found that very few people advocate for children really. Boards of management will advocate for the school. Teachers' unions will advocate for teachers. Patron bodies will advocate for the ethos of the school. It is very difficult to get a body that actually advocates purely and simply for the rights of the child.
In my part of the world there are exasperated parents who cannot get assessments and or the basic interventions that parents in any other European country would take as the norm. They face incredibly elongated waiting lists of up to 72 months a number of times for various interventions. We have the cruel scenario of trying to get a child into the local school. Imagine the humiliation of parents going to the local school and being told that there is no place for their child because of what their child is like. They have come to the conclusion that they just have to accept this and go from school to school, sometimes going to up to 20 schools.
We now have this new provision from the Department. I do not want to be unfair to the Department, but I feel this is an area that it does not embrace, love or celebrate. It feels like it is a massive drag on the resources and the money it needs to spend. I know that because even within the system SNAs are not respected. In many school staff rooms, they are not respected. Teachers are called by their second name, but SNAs are called by their first name; that is a deliberate hierarchical decision made within staff rooms. When I stepped into that space as a teacher, I was the de facto substitute for the year. There was a sense that I was not really doing a very productive job and because Ms So-and-so was out, I just had to step into her class for the day. There is that level of disrespect at a local level and at the national level as well. Parents then feel they have to go through war for basic provisions. I do not even know what I am asking the witnesses. They might like to reflect on some of the things I have said.
I believe that we may have too many primary schools. Politicians saying that means that some people immediately accuse me of wanting to close down schools. That is not necessarily so. I feel we have too many schools with a small enrolment and if they had a bigger enrolment, they could easily subsume all the challenges presented to them in their own geographical area. I am fascinated by the Finnish model whereby every child in the jurisdiction around the school has an absolute right to attend that school and must attend that school. There is never any question around resources. There would never be a question mark over facilitating a child regardless of their background. How can we get to a position where we can achieve that?
On the more recent development, the Minister has said that 66% of schools will not be affected by the new allocation model, which by my basic maths means 34% will be affected, but she said it would be by no more than five hours. I apologise if this question has already been answered. Can the witnesses give us some kind of picture as to what that will really mean for the 34% of schools affected? Mr. Harris might wish to reflect on some of the things I have said there. I know we have had some communication recently over this.
Mr. Adam Harris
I think the Deputy has captured very well the experience we hear from families, day in and day out. When it comes to planning and supports in this area, there is a certain sense that it is constantly being reactive as opposed to proactive. We see that in big ways when we are planning year to year as opposed to looking ahead into the future and addressing problems before they arise. We see it at the micro level with individual families. Very often the families involved are at sea and a child's rights nearly have to be breached before they can actually be maintained or upheld.
We see that with school places. As we said in our opening statement, we see that with the very concerning return to soft barriers. Many families have been told in recent days that their child cannot continue in mainstream next year, or that the child is not welcome because the school will not get the hours for complex needs. That may be unlawful, but there are very few people available to help. That is the reality. If a family is unhappy with the allocation their child is receiving in this current model, they will be directed to the school's complaints process. A child in second class might have to wait until fifth class to find out and get the support they need this year. It is an elongated model that is not created to support the child or vindicate their rights, but very often to frustrate them, in which the whole dynamic and power lie with the school.
Fundamentally, we need to get to the stage where we are not talking about charity but about rights. The UNCRPD demands no less. Critically, we need to move to a point where there is proper governance of these processes. Boards of management have oversight of these allocation models within their schools. How many of them have any training or understanding in disability? Very often the experiences of our families can jar or even conflict with the preferences or priorities of the mainstream families. We need to have very clear safeguards and governance to protect the investment that is in place.
Ms Derval McDonagh
The Deputy asked how we should move forward and develop a better system for all children which is what is clearly needed here. It is not just Inclusion Ireland saying this; there are other advocacy organisations also saying it. The UN is also telling the State about it. Currently, we do not have any data about the educational outcomes for disabled children in Ireland. We have an overall league table which places us very high and indicates our educational system is doing very well compared with other countries. However, we know that kids are falling through the cracks every day of the week within that.
We need to start measuring the educational outcomes for children who are receiving this investment from the State, as the State sees it, and examining what they are coming out with at the end of their educational experience. We do not have data on that.
This speaks to a deeper question of how we value children. Do we value all children equally? We are setting them up for failure every day of the week. That is not just down to the resource allocation models, but also to how we train and support schools, including educators and SNAs, in valuing and understanding difference. We live in an ableist world, which has been well documented by advocacy organisations. We need to unpick a lot of that and understand how we value difference in our education system. I will provide an example. A couple of weeks ago, I spoke to a family member whose daughter used a high-tech AAC device to communicate. Every day, she travels an hour and a half in a taxi to go to school. She travels past her local school, which is missing out on the benefit of having that kid, who communicates in a fabulous way through using a high-tech device. All of the students in that class are missing out on the experience of being educated alongside her. Instead, she is travelling to another environment. Why can we not support that child to attend her local school? Why can we not value her place in that school environment? Why can we not see that inclusive education is good for every child – the disabled child, but also every other child in the classroom? There are fundamental principles that we need to address as a society as well as the practical steps that need to be taken to make inclusion work.
I always say that we separate children in the education system on the basis of gender, religion and income, but we are also separating them on the basis of disability. That is a lot.
I thank the witnesses for appearing before us. Listening to them was interesting. The issues that stand out are those of trust and consultation, especially with children. Children need to be central to consultation. We have heard that loudly and clearly today.
Ms McDonagh’s comments on the circular and her question about who it spoke to were interesting. Language is important. When we speak, it is inaccessible much of the time. That is generally the case in the Oireachtas and it can be the case in the media and so on. We need to ensure that the language used in circulars is accessible for everyone.
If the advocacy forum were to stay in place, what changes would the witnesses like to see or what changes do they believe are needed? This question is for anyone who would like to answer.
Ms Derval McDonagh
I will address the Deputy’s first point. Accessible information is a fundamental right under the UNCRPD. We need to make many improvements in that space. It can sometimes be seen as a luxury add-on and people will provide accessible information if they have time, but it is fundamental to how people access their human rights and understand what their rights are.
The advocacy forum could be strengthened. It is ad hoc and reactive at the moment. We spent a good bit of time in the forum discussing summer programmes. There is no doubt that we needed to tease out that issue and we were reacting at a time when it needed attention. However, we need to move into a proactive and properly engaged space where we are seen as a consultative area and as partners at the table in the examination and co-design of the future of the education system for children, where our contribution is valued like other education partners and stakeholders’ contributions are. We need to get into the space of mapping out and tackling the critical issues facing children in the education system today. We need to start considering a vision for a more inclusive model of education over time. While we have examined some issues – they were valuable issues to examine – we also need to consider human rights issues, such as seclusion and restraint, the application of guidelines and the code of behaviour on children in school, etc. We need to get into that right space as quickly as we can.
Does anyone else wish to respond before I proceed?
Dr. Fidelma Brady
I will echo Ms McDonagh and Mr. Harris’s comments about the forum. In recent years, the forum has just reacted. There is a new circular or announcement, so the forum comes back, we are flat out for a couple of weeks and then the forum suddenly falls away again. The forum needs a more specific role.
This issue relates to the circular’s consultation phase and what was missed by the Department of Education in just launching the circular. We appreciate that the Department has to consult boards of management, unions and so on, but as Deputy Ó Ríordáin said, these children have no voice. We are essentially the voice for these children. Their teachers have their unions and the boards of management have a voice in their management bodies, but this cohort of young people with specific needs has no voice. We are just three of the organisations that work with disability organisations nationally. We are their voice, yet we are not consulted with or asked anything. Had we been asked about this circular long ago, we would not be here talking about it.
That is fair.
Dr. Fidelma Brady
We need to make a stand. We spent recent weeks listening to parents and schools. My colleague, Mr. Kelly, spoke about scaremongering, but no one is scaremongering. We are not scaremongering. I am reflecting what my members are telling me. Well, they are not my members, but members of my organisation. The schools are not scaremongering. They are genuinely afraid and do not know what they will do in September, whether they have lost teachers and how many SNAs they will have. Parents are not scaremongering. There is a general fear out there. The Department needs to stand back, take all of this on board and take the situation forward.
We talk about the importance and education of the child, but where is the child’s voice in all of this? We are not the voice of the Department, yet there is a sense from our engagements with the Department that we are being asked to go back, talk to the parents and sort it all out. That is not going to happen. What the parents need is not another statement from me, Mr. Harris, Ms McDonagh or any of our organisations. Parents need a clear statement from the Department on this matter. Mr. Kelly and I have had three engagements with the Department over the past week, and at no time have we been told that it is willing to provide this information to the parents itself. Information going from the Department to the parents is different than a statement written by me. I am not the Department of Education. We need to get the idea out there that the parents and the children have a voice, but they also need the respect of the Department and to have information.
The circular was deemed to be solely for teachers. I am a teacher and have been for many years, but I could not figure the circular out. My first reaction was to ask where complex needs had gone. I read the circular twice, then said to myself there was something wrong. As to the idea that parents do not see these circulars, the Department is greatly mistaken. They certainly do.
Mr. Adam Harris
One of the steps we need to see from the Department is a recognition that its obligation to consult does not stop and start at the Education Act. I am confident that, were the Department present today, it would tell the Deputy that it had a statutory obligation to consult certain people, but the Department also has a public sector duty under the IHREC Act and clear obligations under the UNCRPD. We cannot be cherry-picking from the Statute Book our obligations around consultation, but that is what is happening at the moment. It very much feels to us to be a case of ensuring that teachers and schools are happy and the child’s needs not being prioritised. It is the Department of Education, not the Department of teachers and schools.
Regarding the principals’ forum, approximately 25% of national school principals share this concern. One might ask why the significant actors – the unions and management bodies – are not as exercised.
It should be borne in mind that they have competing priorities. The only priority for us is the educational outcomes for children with additional needs and that is why our voice needs to be central to this process.
That is a good way of putting it. It is the Department of Education and not the Department of schools and teachers. I know I am out of time but does the Cathaoirleach mind if I ask one more question?
Do so quickly.
It is about the current budgetary allowance for the NCSE and NEPS. It was recently reported that the NEPS is on the verge of collapse. Will the budgetary allowance include a provision with the necessary capacity to review the allocation system in light of the removal of complex needs? Will an increase be needed? I am interested in that. My question is specifically on the budgetary allowance.
Mr. Adam Harris
Our understanding is that the NCSE will conduct a review. Our understanding is that 84% of the review applications last year were unsuccessful and it is unsurprising that we would be concerned when there is no budget for this appeals process, that it is not independent or robust and it lacks the integrity we need to deliver for children.
I thank Mr. Harris. I really appreciate it.
I welcome the witnesses to the committee meeting and thank them for their opening statements. I am disappointed and sorry to hear that trust has broken down between them and the Department. As Dr. Brady said, they are not just from representative organisations but are speaking on behalf of children in schools. People sometimes regard representative organisations as entities unto themselves but it is important for us to recognise that the witnesses here because of who they are speaking on behalf of.
The only positive thing I would say is that even though trust has broken down, it can be rebuilt. I urge the Department and the Ministers to try to do what they can to rebuild that trust. I know the witnesses will not be left wanting in the efforts they make to rebuild trust and it can be rebuilt.
Perhaps I will start with Dr. Brady and Mr. Kelly. I was interested in what was said about the way in which children with Down's syndrome do not thrive educationally if their complex needs are not specifically addressed. How are the specific needs of a child with Down's syndrome addressed in, say, a national school to help the child to thrive educationally? What are the witnesses concerned may be missing as a result of the changes?
Dr. Fidelma Brady
I thank the Deputy. We stated that a child with complex needs will need suitable supports to make progress. As has been said, it is not just about literacy and numeracy. Down's syndrome is a complex disorder. It is a chromosomal disorder and intellectual disability. It is not just about bringing the child out for a bit of an extra push in respect of reading or numeracy. These children have issues, including very severe speech and language disorders, motor and sensory issues, auditory and visual differences and they have health issues. All of these things together need to be met in a school situation. It is not going to work if a thin layer of support is going to be there to give them an extra boost in maths and reading. That is what we mean when we say their complex needs must be met. Mr. Kelly may wish to come in.
Is it working effectively and successfully at present?
Dr. Fidelma Brady
It absolutely was before this whole debacle blew up. There were certainly cases where children with Down's syndrome were in mainstream schools and their parents expressed a level of dissatisfaction with the education they were getting but, in the main, children with Down's syndrome were getting an awful lot of support to develop their sensory issues and motor skills. They were getting a multifaceted curriculum and all aspects of that were being developed. The schools were really trying and engaging with that. We have delivered a number of webinars because there is only one of me in the country. We have been delivering primary and post-primary webinars every month during the school year. We have had between 150 and 200 teachers at the webinars, which would not happen if they did not want to know the best thing to do about the situation. However, those teachers are now being told they will be in a school for only two hours per week and will have to face 30 children. Where are we going to see the difference? The support is going to be spread thinly. Some children might get a bit of support. That is where we need to look at the complex and specific needs.
Do Mr. Harris and Mr. O'Flanagan share the concerns that Dr. Brady has expressed?
Mr. Adam Harris
Yes. We just have to look at the prevalence of autism within our community. We have to consider how needs extended during the Covid-19 pandemic. The reality is that investment is not keeping pace at a time we are supposed to making the shift towards a more inclusive model. One of the lines from the Department circular that particularly caused consternation referred to one of the justifications for removing complex needs from the algorithm being that we have more special classes. Such classes are an important resource for some children in the current system but they are no alternative to investing in the mainstream and the vision of every child having the opportunity to access mainstream education.
Mr. Harris said in response to a question from Deputy Farrell that one of his concerns about the exceptional review process is that he does not think it would be independent. I know he also has other concerns because no budget has been allocated or identified. What did he mean when he said it was not independent?
Mr. Adam Harris
Essentially what will happen is that the NCSE will conduct a review and make a recommendation to the Department of Education. The full budgetary allocation has been allocated to schools. The Department, which is ultimately reporting to the Department of Public Expenditure, National Development Plan Delivery, and Reform, is then determining the outcome of appeals. That is not an appeal based on need. Of course, even with independence, unless there is a role for parents to appeal on the basis of need, it is difficult to see how the system would have the required effect.
Mr. Michael O'Flanagan
I agree with both Dr. Brady and Mr. Harris. In respect of resources, the survey we did showed that any reduction in resources would have a negative impact on kids, whatever those resources look like. We are currently doing our Same Chance report and have had more than 1,600 responses. One particular question focused on education and reduced timetables specifically. We know from the more than 1,600 people who have been put on a reduced timetable over the past 12 months that 30% of the changes have been made without consent. If we look open-ended of those data, the reason for that is the schools do not have enough resources. It means 30% of the cohort are missing school days as a result of a lack of resources and without those wraparound supports, whether they are SNAs or SETs, we are likely to see a further increase in that regard.
I will make one other point. Deputy Ó Ríordáin has left the meeting but no parent should have to fight to access resources. I come at this issue from a personal and professional perspective. We see far too many families who have to struggle to get simply resources that will have a positive impact.
Finally turning to Ms McDonagh and Mr. Jacquinot, I will refer to an interesting point raised in their opening statement. Ms McDonagh referred to the fact that politicians at national level positively present their performance by referring to greater expenditure. She said it is important to note that "the impact of this investment is not carefully reviewed, evaluated or monitored effectively". I can understand the criticism but in fairness to politicians who are not engaged on the issue all the time, it is an indicator from a political point of view that more is being done if more money is being invested. What would the witnesses like to see done more effectively in terms of review and evaluation?
Ms Derval McDonagh
It has been pointed out to Ireland by various UN committees in recent years and more recently that we are not presenting disaggregated data about disabled children's experiences in school. We are not carefully reviewing and monitoring where that investment is going and what it is leading to in terms of educational outcomes for children. It is often presented to us that these are anecdotal pieces of information we are presenting. When we go out with a survey, we are getting a large volume of responses. This is not isolated to one or two children in one or two schools. It looks like this is an experience that many disabled children are having in school, which is the lack of ambition for children. We do not have data for the educational outcomes for children who leave special schools or the educational outcomes for children who leave special classes after being in such classes for their entire education. We do not know the educational outcomes for children in mainstream education. That is a real concern for us.
We measure what we value and we value what we measure, I suppose. There is a need to be ambitious for children, but we do not see enough ambition.
We need to see the data as to the outcome of people's education.
Ms Derval McDonagh
We need to see the data and start measuring that. We hear all the time that more is being invested and there have never been more SETs or special classes, but what is that yielding for children? We are not just talking about numeracy, literacy and STEM scores, although there is no doubt that is important for some children; we are also talking about well-being outcomes, as well as how much children feel they belonged in their local school, whether they were bullied and what was their experience. We need to go back to the voice of the child in education, which is sorely lacking, and understand what their experience is. Families tell us that every day of the week but we, as a State, need to do better in gathering and presenting that information.
I thank Ms McDonagh. That is very interesting.
I thank the witnesses for again appearing before a committee. In the nearly four years I have been a Member of the Oireachtas, there has been very little action for people with disabilities. That is no disrespect to the Oireachtas Joint Committee on Disability Matters or this committee. We also had the autism committee. First and foremost, there are too many Ministers dealing with the issue. We have a Minister of State with responsibility for special education but her Department has done very little in the past four years. I am speaking from my experience. There have been more than three presentations in the AV room and summer programmes for people with autism and people with special additional needs have been launched, but there has been very little action. I had to take a minute out and ask what are we doing. What is the difference between children with special additional needs and children with complex needs? There seems to be an issue when it comes to the use of the word "complex". I do not mean to be ignorant by saying that. When we use the word "disadvantage", we are disempowering people from marginalised communities. When we use the word "complex", are we making the child the problem, rather than the system being the problem, as was spoken about earlier? For me, it comes down to the failure of the State to implement the answers that are already there. We can do more reviews, but all that does is kick the can down the road. I have seen it with the Traveller community and other marginalised groups. We, as politicians, are really good at kicking cans down the road. I want to be part of the solution for children with special additional needs. Four years ago, Mr. O'Flanagan made the point to me that it is not just about bricks and mortar; it is also about the wraparound support for children. That point resonates with me at every committee meeting I attend when it comes to people with additional special needs. We talk about the social model for disability. We must ensure the needs of children who have chronic pain or issues in the education system can be met. What is the difference between the child with additional special needs and the child with complex needs? I understand the term "complex needs" but, in this context, does it refer to there being many underlying issues?
The witnesses from AsIAm stated that it cannot use the data that is collected. Why can it not use that data?
If we are serious about inclusive education, we need to make sure schools are resourced, children are at the heart of this conversation and parents of children with special additional needs are represented on the boards of management of mainstream schools. How do we move forward with meaningful action for children with special additional needs? I see it within the Traveller community. Mr. O'Flanagan referred to reduced timetables. A Traveller woman came to me a few weeks ago and told me her child was being labelled as bold and was being put out of school at 11 a.m., but she had not been consulted. I am sure it is no different for a child with autism or Down's syndrome. Before I came to the Oireachtas, I applied for a job as care assistant to a child in Ardara, County Donegal. I will never forget how stressed the mother was for her child. He was due to go into second-level education but she could not find a place for him. Every day, she had to drive for an hour to bring him to school and another hour to bring him home. That is happening across the board for children with special additional needs. Let us have special schools and special classrooms, but children who can be successful within mainstream classrooms should be allowed to be in them. I came through the education system with dyslexia. People with dyslexia should not be segregated. There are different forms of disabilities and abilities. SNAs can play a key role in children being successful within the education system. It is about success within the education system. What can we do to bring about meaningful change? I know the representatives of the NGOs, as people with personal and professional opinions, are blue in the face appearing before these committees, going to presentations in the AV room, talking the same talk and knowing the answers, but how do we implement it?
Mr. Adam Harris
There is lots to cover there. I am sure Mr. O'Flanagan would like to address some of the Senator's questions. It is important to state that the language around disability is changing all the time. Within AsIAm, we prefer language that is neuro-affirmative and rights-based and focuses on the changes needed in the environment, rather than in the individual. We believe in a model that invests in such a way that ensures all children are able to be included, with that investment being based on need. As regards the term "complex needs", perhaps a better or more accessible way to say it is that we are talking about investing in the children with the greatest level of need. If Department officials were here, they would say the deployment model and continuum of support tells schools to use the resources they have in that way. We are saying there is a need to go a step back and that the resources the schools get should be based on that need to begin with. At present, there is a disconnect between what the needs are and how the resources are deployed. That is a big problem. We understand the challenges that exist in getting the data needed from the HSE, but there is a significant volume of data at schools level that would help schools to make that decision. One cannot say schools are trusted to manage that deployment and have the resources they need but then, when the schools state they do not have those resources and can identify children who need more, say that data is not relevant. We previously had a diagnostic-led model. When I was in national school, by default I was entitled to five hours and 25 minutes of resource a week on the basis of an autism diagnosis. I am not saying that is the right model but, as we have moved to a front-loading model, what we have lost in that process is transparency and rights. We do not need to put diagnosis back into the model, but we do need to put transparency and rights back into it.
I totally understand why people with special additional needs and organisations such as AsIAm have lost trust in the Department. It is due to action and the lack of action. I totally get it.
Mr. Michael O'Flanagan
The Senator asked a question about moving forward. As a collective, organisations such as AsIAm are always willing to work with the key stakeholders in education. On her point regarding the bricks and mortar piece, having the wraparound service, such as that which AsIAm provides, is key. Families raise many issues in that regard with us. We hear about the bad things most of the time, but we also hear about the good practices that exist. Where such good practices are successful, they need to be replicated and modelled throughout the country. In the context of the system that is in place, we have the UNCRPD, the EPSEN Act - the fact that the Act has not been fully commenced is an indictment in and of itself and a reflection on the system - and the Education Act. Sections 2 and 7, respectively, refer to the inclusive education system, as does Article 24 of the UNCRPD. We have legislation that is there to be actioned but it should not fall to parents to action it. By virtue of this being an inclusive society, an inclusive education system should be a given, rather than it being a matter in respect of which a person has to make a case to a board of management or the Department of Education. The inclusive education model comes with two approaches, however. It comes within the culture within the school and the supports the child receives in school, but it also relates to services outside the school, services that are based within the community and provided by the HSE.
We were at a session in the Department yesterday. A representative from NEPS presented a fantastic picture of what the service looks like on paper. We know that the reality of what happens on the ground is very different. If NEPS - I know it is recruiting at the moment, and I welcome that - the HSE and the schools were able to provide the services, the experience would be very different. As I said, there are models, and there are schools that are doing it very well. This can be replicated if the resources are in place. If resources are taken out of the system, it will have an impact on young people.
Dr. Fidelma Brady
I want to follow up on what Mr. O'Flanagan said about working on resources and on taking them out of the system. Mr. Harris gave very good detail on complex needs. We can also refer to it as the level of greatest need. We also have to bear in mind that there are many children in the schools today who the Department of Education are now going to have an effect on by the lack of resources or the movement of resources. Many of those children have not seen a therapist for months, if not years. The support they got in school was something at least, but we now have a situation where there is a risk that they will lose some of the valuable school support and there is still no sign of therapists being employed or of the CDNTs being properly manned. As Mr. O'Flanagan said, we had a fabulous PowerPoint presentation on NEPS yesterday, but that is on paper. Day after day, schools tell me they do not have NEPS psychologists because, for example, someone on went on maternity leave and was not replaced. Similarly, therapist positions with the CDNTs are not being filled. It would almost be laughable if it were not so sad that this is the situation in which we find ourselves. Yet, the only support that schools have had up to now in many cases, with this very vulnerable cohort of children, is now under threat by the reallocation.
Mr. Turlough Kelly
Regarding the terminology, there is a case that the phrase "complex needs" puts the cart before the horse. We might need a better, more descriptive term. In this instance, it is not that the phrase "complex needs" has been removed and replaced with better terminology or been described more adequately in the guidelines contained in the circular. What is alarming parents is the fact that it has disappeared completely. It has not been adequately explained to us or to parents how what was encompassed within the phrase "complex needs" will be encompassed in the model going forward.
In the context of joined-up thinking at Government level, one of the reasons we are all here is because this new model was deemed to be necessary as a result of the data from the CDNTs being deemed completely inadequate. We certainly take the Department's perspective on board there. The experience of the Department would seem to back this up. I am coming at this from an advocacy point of view. Our members really struggle to understand how we have these two multibillion euro behemoths of the HSE and the Department of Education and how it is apparently beyond the bounds of possibility for the CDNTs or some other mechanism within the HSE to feed accurate data to the Department of Education's model. In that context, we are having to go back and reinvent the wheel with a different model.
I do not know where to begin. I was listening upstairs and I have been doing some reading over the past few weeks. I read the NCSE report last week - several hundred pages of it. I wanted to inform myself. To be fair - and I am not being facetious - we generally do a good job with education in this country. Having read that document, however, I came away thinking that a parallel educational universe also exists. I have got to know most of the witnesses over the years. Like Senator Flynn, I believe we are all, including the politicians here, advocates in our own way. That is what I feel at times when I advocate for people and families in difficult circumstances. Until Mr. Kelly's intervention, we had failed to discuss adequately - albeit it is covered in the witnesses' statements - the culpability of the Department of Health and the HSE. It is there in black and white. These two bodies have simply not provided information. I am not pointing this out to exonerate anybody in the Department, but when a State body or Department does not contribute to a process to which it should contribute, that needs to be highlighted. This has led us to the position we find ourselves in with the witnesses advocating for people. If we had adequate data, there might be less stress on people in terms of the one third of children who will potentially lose out on an allocation. I had to get this off my chest because that is the glaring thing staring us all in the face here.
As a former teacher, I have spoken to dozens of teachers, principals and special education co-ordinators over the past few weeks since this announcement was made. Many people are confused by it. I found it quite difficult to find consistency on what the problem and solution might be. It is a mess. As a Government TD, I have no problem saying that I lay the blame solely on the Department of Health. I genuinely do.
I looked at the listings that schools are given. There is an acknowledgement of the literacy, numeracy and the educational disadvantage, which I assume comes down to some geographical bias, or whatever the case may be. However, there is obviously no provision there for, say, student X having a visual impairment or student Y having some other disability. This is where I would come back to the Department of Education. Going forward, is this the next step for the Department of Education or the NCSE to have that included in the assessment? Is that what we are pushing towards? In the absence of HSE data, if that was provided, surely it would contribute towards allaying some of the fears we have heard articulated over the last few weeks. That is my general rant if anyone would like to respond to it before I get into questions.
Mr. Adam Harris
We join with the Deputy in condemning the HSE's failure to deliver in this regard. The non-delivery of any meaningful support from the HSE in progressing disabilities via the CDNTs has been a problem for our families for a long time. In terms of our engagement with the Department, it is not citing that as the sole reason. There is a sense that this model was also of its time, which is a concern for us. To see the words "complex needs" removed from the model at a time in which there has never been a higher level of complex educational needs identified in our schools, is very worrying. While I recognise that the HSE's role has been the trigger, I am concerned that it is not the only philosophy that has brought us to this point.
On the question of where we go from here, the predictors of literacy and numeracy being used will really only scratch the surface of the needs for autistic people. Colleagues here have said the same about other communities. If that is the only metric of what our complex educational needs are within education, I would be very concerned. We also need to recognise the gap between the HSE and the Department of Education. A review of the EPSEN Act is ongoing. I welcome that. Ultimately, we need to see a review of the Disability Act 2005 as well. These are sister pieces of legislation. If we want to overcome some of the challenges around the HSE's part in this, the review of the Disability Act 2005 will be critical. At this stage, it is probably safe to say that it will take place in the next Oireachtas.
I was struck by what Dr. Brady said about complex needs. With the model as it is now, does she think that children with more complex needs will just end up going into more specialised settings, that is to say, special schools? Is that the inevitable conclusion?
Dr. Fidelma Brady
I can only say what I hear from our parents. This is certainly an issue that has been expressed to me over and over again. I am like a broken record on this point. Children with Down's syndrome do not just have literacy and numeracy issues. Using standardised testing scores as a pillar and trying to tell us that this encompasses complex needs has caused much disquiet. Parents are reacting to this.
They are saying that if their mainstream school down the road is not going to be able to provide adequate support for their child, who will need help with literacy, numeracy, working on memory issues, their issues of concentration and maybe some physical disabilities and - as the Deputy pointed out - their visual and hearing problems, then they are not going to go down that road. That is sad in a world in which we have come a long way. I am not saying we have arrived; we have a long way to go but we still have come a long way. We run the risk of almost forgetting about that and about all the good work that has gone on in recent years. This is leaving us with very sad and worried parents, and that is why we are here.
Ms Derval McDonagh
I want to pick up on the point about information because that has come out loud and clear today. There is such confusion about the circular. Even speaking to people working in the system, including experienced principals, there is confusion. Taking a step back from that, this circular was written for the system. It was not written in a way that is readily understood. What about a child with a visual impairment? What about a child who uses alternative augmentative communication to access the curriculum? Will they be included? These very basic questions the Deputy is asking need to be answered in that way directly by the Department using accessible, plain English in order that all stakeholders can fully understand. That is a really basic piece that needs to happen next. That is what the Department needs to come out with in order that all stakeholders - children, families and educators - can fully understand the ramifications of the circular.
I have one final question with regard to the lack of engagement, and what the witnesses are saying.
Briefly.
We have been given a document - I presume it is from the Department of Education - about this advocacy forum and 50 engagements with advocacy stakeholders. I do not know how far back that goes. To clarify, however, were any of the witnesses involved in the process relating to that document or do they know anything about it?
Mr. Adam Harris
Yes, we did get this figure last week as well, which I think refers to every instance in which they have met us over the past two or three years. That is utterly relevant in the context of consultation. It is about what the Department is talking to us about, when is it talking to us about it, how is it asking the questions, whether we received the briefing material in advance and whether it was a briefing or a consultation. The point is that when the tyre hit the road on this issue, which is a major shift in how we allocate resources for children with additional needs, the voices of children with additional needs were locked out and were not part of the process.
I have one last thing for Mr. Harris. I was listening to what he said when I was upstairs. Going forward, the review is not going to happen for schools until May or June. I will not say Mr. Harris is dismissive about the potential of that review, but I suppose he did not speak as if he is overly optimistic about it. What led him to arrive at that standpoint?
Mr. Adam Harris
Everyone here has more experience of dealing with Departments and agencies more than I do, but I think it would be pretty standard practice that if you are going to run an appeals process, you budget for it and hold a certain amount back knowing that no algorithm - as is the case with this one - is perfect. That has not been the case, so we have been told it will be all about keeping within the overall budget and that there is no absolute figure. This does not indicate that there is going to be a robustness to what is proposed. There is also the reality that when it is very easy for the Department to continuously say that schools have the resources they need, it is also very easy to pass the blame back to schools when they are telling us that they do not have those resources. There is also the fact that 84% of schools that appealed last year were unsuccessful.
I thank the Chair. I apologise for not being in the room. I was at another committee. In addition, we are in a voting situation today. The witnesses will have to excuse me if I may not be able to stay to listen and respond. I have my colleagues on alert to come in and get me.
I thank the witnesses for being here and for the work they do in supporting families and those who need extra support around helping to develop their full potential as regards what they can do in life and society. Obviously, education is a huge part of that. My colleague Deputy O'Sullivan has just spoken about how confusing it can be. I know that witnesses have all made that point,. As Mr. Harris said, it is not just confusing, it is contradictory as well. I certainly agree.
About three days after the announcement was made regarding this, I tabled a Commencement matter in the Seanad to try to get some clarity. To be honest, I was even more confused after the response I received. What is not confusing, though, is how some schools are impacted. We have had a number of correspondence from schools because young people themselves and their parents are very concerned but schools are also incredibly concerned. For example, one school indicated that it is only getting an increase of 7.5 SET hours. I was at a school yesterday, St. Patrick's Boys National School in Rathangan. Because its hours are being reduced by five, from 85 to 80, under this new scheme, it is losing a teacher. There is nothing confusing about a school being told that it is losing a teacher who is badly needed. The same school is desperately waiting for a new ASD class. To add further, with regard to the appeals process that it is there, it has been told that there is not enough staff in the Department of Education to go through the appeals. That is a real problem. It is fine if a school is told it is losing a teacher, particularly as there is an appeals process. However, the school in question has been told that there is not really an appeals process because there are not enough staff to deal with appeals. The appeals process starts around April. Schools are waiting to know, but there is not going to be anything from that. That, I have to say, really concerns me.
On the briefing note that Deputy O'Sullivan referred to, there are two aspects of concern. It states that schools expressed concerns that the supports from the HSE to include speech and language therapy and occupational therapy were not routinely available, and therefore there was a concern that the HSE would not have a full understanding of the complex needs of children in the school. That was one of the reasons we were given as to why the SET model was reviewed and updated. I agree with what has been said about the CDNTs and the assessment of needs process. That is ultimately what is leading to many of these problems, but what is happening is certainly not going to help alleviate it in any way.
The same document states that the Department worked with the inspectorate, NEPS and the NCSE to determine new and better ways to determine complex needs. There was no consultation with any of the witnesses, which is completely wrong. What is underlined in what we have received is that complex needs have not been removed. Instead, high-quality, verifiable data from all 4,000 schools is now used to determine educational needs. This is not a question for the witnesses but a question for us in terms of how the Department defines what is high-quality, verifiable data. I know some of that is coming from the assessment tests in maths and English, which start in second class. I have a big concern around that with regard to what happens prior to second class. Also, there may well be some children or students with complex needs who may do well in English and maths but who also have other complex needs and may not do well in socialising or in all of the other areas that schooling is meant to support, apart from all of the other criteria. There are questions for us about what constitutes high-quality verifiable data. I am interested in the witnesses' views on those matters. Maybe they could respond.
Ms Derval McDonagh
I will take the Senator's point about what she is hearing from schools regarding the lack of resources and the very real concerns that any reduction could lead to an impact on disabled and autistic children. Again, this goes back the point about what we are saying. We are saying that we are investing a great deal more in education at the moment, and that is true. We are investing more and there are more special education teachers, but the point that we are starting from quite a low base needs to be re-emphasised.
It must also be stressed that this investment needs to increase quite dramatically over the next number of years. Any indication that hours could be reduced, even by five hours a week, which is what the Department is telling us, means some of those 34% of schools will only experience-----
But the school to which I refer is losing a teacher.
Ms Derval McDonagh
Yes. That is a big issue. That needs to be looked at. If the investment is still at a low base, it needs to be increased. In that context, any reduction is unacceptable for any child in any school.
Mr. Adam Harris
On appeals, a concern we have is that the deadline is in March. Many of our children do not get school places until the summer months. Families hold on waiting to see if they will get a special class place before accepting a place in mainstream. We are seeing a rise in that. What is also concerning about the guidelines, which Deputy Clarke brought to my attention, is that, for example, for an autistic girl who may be diagnosed in fifth or sixth class, the guidelines make very clear that the emerging need or identified need that previously perhaps existed will not be seen as a grounds for an exceptional review. That misunderstands how the receipt of a diagnosis can impact on a child and their support needs.
On data, while we recognise nothing is being taken out of the system, it is purely historical data now relating to complex needs. We see literacy and numeracy as a very limited predictor in understanding complex needs in the classroom.
Dr. Fidelma Brady
I agree. I can sympathise with that school and how it feels to lose a teacher. This goes back to the fact that is real and happening on the ground. Nobody is scaremongering about this. It is a fact. It has been replicated, I feel and I fear, across many schools. That fear is now being transferred on to parents. Their voice in all of this - as Mr. Harris said, the review process is questionable, at best. Children with Down Syndrome are coming into schools and literacy and numeracy is only the tip of the iceberg for them. They need more detailed input on the complex needs issue. We have to stand back and request that this be paused, if that is the correct terminology to use. We need to pause it, step back and look at this, and not just from the point of view of the budget, how much money the Department has or how much it has for this or that. We need to stand back and look at it from the point of view of the children. Mr. Harris indicated that 84% of reviews last year were not successful. That makes a joke of the whole thing. Surely schools are saying they will not bother because 84% of the reviews carried out last year were unsuccessful. It is a bad situation for schools, parents and everybody else to be in. The Department needs to stand back and look at this.
Mr. Michael O'Flanagan
Can I come in briefly?
Briefly. There are other people offering.
Mr. Michael O'Flanagan
Last November, we read that there were 800 unfilled primary posts in schools. There is a shortage of teachers. It is hard to know that and look at this document in isolation from that. There is a bigger picture, which the Department needs to look at, which is attracting teachers into schools. You cannot look at the two issues in isolation.
I thank the representatives from AsIam, Down Syndrome Ireland and Inclusion Ireland for being before the committee today. I know there is much frustration with regard to this new model. There has been a big impact in how hours are allocated. I have a few questions. I know my colleagues have gone through a great deal with the witnesses over the past few hours. I thank them for all the detail they have provided. There is a concern from the Department around the availability of existing resources at post-primary level. What are the witnesses' thoughts on the availability of SET hours at post-primary level? That was a reason it was looking at this model.
On exemptions, the Educational Research Centre, ERC, and the NCCA, when talking about sTen tests, they say children that may have a learning disability may be exempted. If there is an exemption, that gets the highest weighting in the current model. What are the witnesses' thoughts regarding the exemptions and people who are around one or two?
My final question relates to the definition. We use the term "complex needs" so frequently in many arenas. You hear it sometimes in the medical arena, in healthcare and we hear it in an education setting as well. I do not know if there is one set definition. I would love to know. We are dealing with learning difficulties, learning challenges and learning disabilities mixed with physical disabilities mixed with, perhaps, anxiety for young children. All of this impacts their ability to have an enjoyable, wonderful, joyful learning experience in our schools, which we want all our children to have. In my area, Roscommon-Galway, in Ballinasloe, there is St. Theresa's Special School, so we are very fortunate. There are additional classrooms which we were able to provide, thank God, but we are also looking at additional classrooms, particularly for post-primary, secondary level. In our town, there is a girls' school, where I went to school, Ardscoil Mhuire, and Garbally College, which are amalgamating. The Minister of State, Deputy Madigan, visited that area. The challenge is that they need more special needs classes. Although I know we are specifically dealing with mainstream, would the witnesses mind if I posed those questions? Perhaps starting with Mr. Harris or whoever would like to respond from each of the groups.
Mr. Adam Harris
I thank the Senator. To begin with, we recognise that demographic change is happening on the ground. Many children who were in primary school are now progressing to secondary school. What is getting lost in that narrative is that it assumes there was sufficient resource in primary school to begin with. From all of our consultations with our members, we know that is overwhelmingly not the case. Resources are being taken out of a system that was already underserved. That is the starting point. On the ERC and exemptions, only about 1% of children qualify for exemptions from those tests. The reality is there are many children in our community who have high support needs in the classroom and will need significant support to access the mainstream curriculum and will also perform very well at those exams. That shows the complexity. To simplify the model in this way disrespects that. That is the important message.
On complex needs, we have been having a rich discussion this morning about what we really mean by that term. We welcome moving to a more progressive framing of that in terms of the UNCRPD. Fundamentally, we are talking about the students with the greatest level of need. The Department has previously clearly defined that but for some reason is now moving away from that. Critically, if the Department would like to get to a point at which there is a shared understanding, the starting point would be to talk to those communities most affected. There has been no such consultation on what defines complex needs.
I thank Mr. Harris.
Dr. Fidelma Brady
To pick up on Mr. Harris's point on what a complex educational need actually is, generally speaking, as somebody who has worked for many years in the education of children with Down's syndrome, it was not a term I was bandying about all the time. We rarely referred to it. All of a sudden, it is the arrival of this circular and those three little words are missing. Now, all of a sudden, we are obsessing about complex educational needs. From our perspective, it is impossible. It depends on what country you are in or which research you read that will give you a definition of a complex need. There is global developmental delay, for instance, which Down's syndrome can be considered as. If you take complex need from that perspective, it is a significant delay in two or more developmental areas. They are growth and fine motor, speech and language, cognition or cognitive profile, personal and social development, which we often disregard because all of a sudden the Department is bringing us down the road of reading and numbers for the sTen tests.
The activities of daily living are something we also have forgotten about, which also leads nicely to the Senator's question around post-primary schools. There is SET allocation at post-primary school level but its effectiveness is questionable. Mr. Harris already said this morning that SET allocation at post-primary schools is used to reduce pupil-teacher ratios. I have seen many instances where the only SET allocation given to students with Down's syndrome, who are officially supposed to get one-to-one support, is within a small group because schools are trying to maximise the small amount of time they get. Instead of a focus on what the individual child needs, it is about getting all the children who need it and putting them in one room. I have seen small groups of 30 students in post-primary schools. In my opinion, those children would be better off at home than being in that situation.
Let us move on, as we must finish by 1.30 p.m. I am conscious of the time and two more members wish to speak. I ask the witness to be brief.
Ms Derval McDonagh
As for post-primary level and the allocated model, we are told it is because of changing demographics and that the resource needs to move.
Yes, that is up there.
Ms Derval McDonagh
Like Mr. Harris said, we are moving from a system that has been underfunded and under-resourced and that is a huge concern. That is not to deny that post-primary needs to be resourced properly as well.
As for the STEM course, that is a narrow focus on education and education access and we have concerns in this regard. In respect of the complex needs, we all agree that we must move on from that terminology and language. We must move to the social model of disability in which disabled children are described in ways that are more meaningful, that respect them as rights holders, and that look at the accommodating rights they should have in accessing their right to education, rather than labelling them with complex needs. However, we need to capture it, somehow, in the current system and this is how it is allocated.
Okay, I thank the witness.
I thank the witnesses.
I have a question around special educational needs organisers, SENOs. A person could get a private assessment by someone who is well qualified and which cost parents a lot of money only for the SENO to completely rubbish that private assessment despite that SENO having no qualification. Most SENOs do not have the qualification but maybe some do, I am open to being corrected on that. I have no doubt but that parents have contacted Deputies across the House as public representatives on this issue. I have experienced this on numerous occasions but parents should not have to come to me as a public representative. It shows the kind of system we have. This is a part of our educational system that has totally let us down.
Deputy O'Sullivan talked about the fantastic education system Ireland has and I take that point. Ireland has a fantastic education system and we should be proud of it. Two weeks ago, this committee went on a study trip to Scotland. Its system has totally broken down right across the board and it needs fixed from the ground up. Ireland does not need that; people have fantastic opportunities of which they can avail in Ireland, class sizes are becoming smaller and we are making strides in all of this. However, this is an area that requires a huge amount of work and investment. It needs investment right across the board, from the building unit to the transport system. I wish to hear the views of the witnesses on the specific point around SENOs, the decision-making process and the autonomy they have.
Mr. Adam Harris
I thank the Cathaoirleach. It is an important issue. Last year we polled the community for the first time ever and a majority of families we heard from, that is, 1,603 families, accessed their diagnoses privately, as opposed to publicly. That shows how broken the HSE diagnostic system has become. A real problem for families is that not only must they access the private system but there is now often a waiting list for private assessments because the public system has got so bad. We are in a situation where the State has not defined what actually constitutes an assessment. Other countries have clear national guidelines around assessment but Ireland does not. Therefore, families get an assessment only to find out that it does not meet the criteria, it was not worded correctly or in the worst scenario, the assessment was done by a professional who is not qualified due to a lack of regulation. There is a need for national guidelines on assessment to feed into the education process. We have a broken system in that within the health system, people are continuously told they do not need a diagnosis and in the education system they are told they do not need a diagnosis, except under certain circumstances. Often, families are told different things by different Departments and one system is a failure. This issue is an example of one issue having a consequence on another system. That is worrying. While the National Council for Special Education, NCSE, will be conducting these reviews, there needs to be an independence to them. That is the most important point. If the Department is as confident in this allocation model as it says it is, it should not fear an independent appeals process.
I know the other witnesses will agree with what Mr. Harris has said, but to add to that point, do they feel that SENOs should be more of a postgraduate and highly qualified role than it is at present? This would lead to a huge issue in recruitment and getting qualified people as that is a big issue right across the system. Do the witnesses feel SENOs should be more qualified than they are to undertake the role? I am aware the role may have changed over recent years but what are the views of the witnesses in this regard?
Dr. Fidelma Brady
It is my understanding that the role of the SENOs has evolved to a certain degree and that a whole new tranche of SENOs has been appointed in recent weeks who have the qualifications. However, they are not qualified to the extent that I believe they should be questioning the opinion of fully qualified professionals in their field who may have highly rated masters or doctorate degrees in psychology and so forth. While I am aware that there has been some development on the qualifications required for SENOs, I am not up to speed sufficiently on it. I am aware of parents in the past who have had psychological assessments rubbished because SENOs decided they were not getting the support and that was it.
As for parents getting assessments privately only to then find they are not appropriate or do not meet certain criteria, I dealt with a couple of cases where parents went to the North for an assessment. That caused absolute chaos as the scales for rating children's needs in the North are totally different to those the South. Those parents spent a considerable amount of money and they may as well not have bothered because the assessments were not accepted.
The scales can differ down here as well if one gets a private assessment.
Dr. Fidelma Brady
Absolutely. Therefore, we need to be on the same page. As Mr. Harris said, in a nutshell, there is a need for clearly defined guidelines on the provision of assessments and on the interpretation of the assessments by the SENOs. In my experience, sometimes it depends where a person is in the country. Children seem to be getting a lot more in one part of the country than in another. In certain instances, it depends on the personality of the SENO.
Okay. Does Ms McDonagh wish to speak on this matter briefly?
Ms Derval McDonagh
It is true that we can be proud, in general, of the education system in Ireland. However, we need leadership around the issues facing disabled children within the education system and an acknowledgement that while there is a good overall model of education, there are children being failed every day within it. Trust was mentioned a couple of times today and building trust is the first step. To build trust, the first step is an acknowledgement of that fact. From there, we can build a better model of education for all children.
Okay.
I have one last question. This committee did a huge amount of work when it went to the UK to study mental health supports in primary and post-primary education. That was approximately two or two and a half years ago and a lot of the committee members have changed over those two years.
About two years ago we made a recommendation to the Department of Education which, in fairness, took it on board. Taking on the recommendation is one thing but having the best service provided for the child is another issue. Therapeutic services are being rolled out in primary schools now on a kind of trial or pilot basis at the moment. There is no link between the Department of Health and the HSE. If we are to have the best therapeutic services for children and for the families as well, because there is a follow-on impact, do the witnesses believe the HSE and the Department should have a major role to play here for the wider family unit? It might not be just the one person needing the therapeutic services but the whole family, which I know it is a totally different ball game. There is no use looking after just one person in the family if there is a bigger issue. In a lot of the cases that are brought to my attention, where people are in need of therapeutic supports and counselling etc., it is not just one member of the family needing support, often the parents need it as well.
Ms Derval McDonagh
We must bring it back to who is the rights holder and, in this instance, it is the child and that child does not exist in a vacuum, they exist in the context of their family. If we were designing therapeutic services and supports it would be about integrating the care and support that the child needs across home, community and school. Right now what we have are very fragmented services and supports; we have he HSE doing one piece and we have the SIM model in schools, which is still bring run on a pilot level, even though I know that that is being evaluated at the moment doing another. We also have patchy access to CAMHS and other community supports and again, this has to come back to who is the rights holder here and how we integrate supports around that child. Indeed as the Cathaoirleach has rightly said, we must include the family as part of that and meet the needs of the family where they are at and develop services and supports where the child is at.
Would anybody else like to add to that?
Gabhaim buíochas leis an gCathaoirleach. agus cuirim fáilte roimh na finnéithe go léir. Usually I make an apology if I am going to repeat myself but I am definitely going to repeat what has already been said. The need for guidelines is obvious. Even in the last week I have dealt with parents whose autistic child has had the AON but has changed over the years and there is now a presentation with ADHD. People have seen multiple private providers and others who have indicated the child has ADHD but they cannot get that assessed and therefore cannot get therapies for it. They are trying to go from the CDNT to CAMHS and are meeting all the issues referred to earlier that need to be dealt with in terms of the autism protocol. We are no further on on what needs to happen. I would also say in respect of people going to the North for assessments, in many cases the people who do the assessments are probably the people who worked previously in the HSE and the CDNTs anyway so it is an utter farce.
On special education teaching I will do my bit as a constituency TD. Scoil Mhuire na nGael, Darver National School, Scoil Naomh Lorcan and a whole pile more beyond that are all talking about being down hours. In some cases it is significant, in some cases it is five hours but I think we all know if a school is down five hours, that is a day's resources so we need to get real on this. The NCSC was before the Joint Committee on Disability Matters a fortnight ago. Its representatives said the review will not deal with complex needs or diagnostics so we are back to dealing with educational needs, literacy, numeracy and educational disadvantage. If complex needs are not being taken into account, from every one of those schools' point of view, I am going to make a mad assumption that the review process is a waste of time, even if it is a resource to the health services which Mr. Harris is saying it is not. I am fairly sure people can give me a one word answer on that. The witnesses are welcome to stop me if I am wrong but unfortunately this might be one of the few times that I am right.
It has already been said that we need a stop to this, we need an NCSE review. Deputy Clarke, Deputy O'Riordáin and I and many others have raised this issue and we get a defence of "consultation happened across the board". Obviously consultation did not happen with the witnesses and we have had teachers and principals organisations coming out and saying that they do not agree with it and that it is an absolute disaster. I could go out and consult with the country and then make the decision that I was going to make anyway and my consultation might not necessarily have been straightforward so a halt needs to be called to this. Is there an element also of wanting to funnel kids into special educational settings, into special schools?
We all understand the idea of complex needs. There are people who, if given the supports, will be able to attain literacy and numeracy but if they do not get the supports, they will not. We are in a disaster scenario and we can talk about the school inclusion model but put the supports and therapies where the need is, that goes without saying. The sooner, the better. We could go over and back but I do not see that there has been consultation. I do not see that there is a review process in place that can deliver either for the kids or the schools. I do not know who the consultation has been done with, other than us having a conversation on how we make do with the supports that we havebecause even if we got everything right in the morning, we do not have the people in positions and we are still dealing with the issue of health versus education.
How would the CDNT have proper information, the thing is absolutely failing from beginning to end? I am not taking away from people who are doing spectacular work in this area but Mr. Harris has said there is sufficient information there that could be used at this point in time and, beyond that, we need to provide flexibility. I know that is not exactly a question. I will conclude now if anyone else would like to comment.
Deputy Clarke has a question.
I want to go back to something that my colleague, Deputy Mairéad Farrell, touched on earlier and that is the role of NEPS and what exactly NEPS does and does not do. In my experience a family who are frustrated and in a position they have never been in before will reach out for any and all straws in the hope of getting some form of assistance provided to their child. In 2013, NEPS delivered 8,000 individual case work supports for children, just over 1.4%, as well as 5,300 support days, which works out as roughly a little over a day per school per year. NEPS is not the panacea of answers that some parents desperately need it to be. However, given the demographic change and given that we are likely to have slightly in excess of 40,000 children with some form of diagnosis within the next decade, to what extent should NEPS be developed?
We will have a minute and a half reply from each of the three groups and we will call it quits after that. I call Mr. Harris.
The witnesses just have to agree with me.
Mr. Adam Harris
I will start by answering Deputy Ó Murchú. We heard about the Department saying there was consultation; we understand there were 40 consultations with managing bodies and trade unions and not one with disability groups which speaks volumes about the quality of consultation and the thinking behind how we got to this point. I do not believe there is a deliberate desire to use this to force more children into special classes and schools but there is a lack of understanding of the repercussions. That is what is happening on the ground and it comes back to ambition. We want more special classes in schools because our system requires them at present but we need to have ambition that children who start their educational journey there, or who need to access it, can progress into mainstream.
That does not happen at present, and this model will not assist in that moving forward.
Our starting point has to be what the motivation was to change the model to begin with and the alternatives. It is very clear that the model was only failing because of a lack of HSE data and for no other reason. That has to be the starting point. We need to get a point where we put transparency into the model. Instead, at the moment it is not about the child's needs; rather, it is about one child's needs relative to another. What that does to relationships within schools and between families within a school is not healthy and is not in line with the UNCRPD. NEPS needs to be developed. The reality of the system is that if there are 1 million students in school, for every 5,000 students, there is one psychologist. We are only getting started and we urgently need to see improvement in that regard.
Mr. Turlough Kelly
I will address Deputy Ó Murchú's question. As Mr. Harris said, I do not believe the intent is to funnel people away from mainstream education but that is the concern a lot of our members are expressing. They are well aware that shutting off access for mainstream education for people who want to access it flies in the face of every shred of policy and best practice at national, European and global level. That is a massive concern that our members have. Overall, regardless of the technicalities of the model and how it may be implemented, there has been a catastrophic failure of communication, which has left a lot of our members and parents deeply distressed. That was something that did not need to happen.
Ms Derval McDonagh
I will take the point about NEPS first. I wholeheartedly agree that there needs to be further development. I believe there will be more investment in the NEPS this year and beyond. However, that needs to be developed as a multidisciplinary approach. We should not invest in one discipline at the expense of others. The school inclusion model needs to be examined and move way beyond a pilot at this stage. We are all drowning in pilots and are sick of them at this stage. We need to make the system work for children in schools at a multidisciplinary level.
Did the NCSE say it would introduce it before the end of the year?
Ms Derval McDonagh
That is our understanding. That only covers another a number of schools. We have two consider system-wide access. The model needs to be worked out together. I will build on Mr. Kelly's point. However the process ends up, there has been a failure of communication. We cannot be back here again. We need to develop systems for proper consultation. We need to provide, as is people's right, information in accessible and clear ways at this point. That is the only way forward.
I thank the witnesses for coming here today. This committee discussion on an issue of great importance has been very productive. I commend all of the witnesses on the important work they do on a daily basis in advocating for services and support for the young people they represent. I thank members.
The joint committee adjourned at 1.43 p.m. until 11 a.m. on Tuesday, 9 April 2024.